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2026 Dementia Learning and Development Team Prospectus 

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Helpcards designed for people living with young onset dementia, making it easier for them to access support while out in the community.

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We provide Talking Mats training - available to book through the booking system 

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We provide Talking Mats training - available to book through the booking system 

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A Talking Mat is a visual communication framework which supports people with communication difficulties to express their feelings and views. Talking Mats can be carried out physically or in a digital space, for example a tablet, laptop or computer for which we have created one of the best apps for communication disability.

Above, you can see an example of a (digital) Talking Mat. It is made up of three sets of picture communication symbols - topic, options and a visual scale - and a space on which to display them.

Once the topic has been chosen, the participant is given the options one at a time and asked to think about each one, placing it on the Talking Mat to indicate how they feel about it.

Our clinical, research and training experience provides evidence that Talking Mats helps people think about and express their views on a particular topic. There are a number of reasons why Talking Mats is effective.
Talking Mats support comprehension by:
- Helping people process concepts by breaking information down into small, manageable chunks

- Allowing the client time to process information and respond in their own time

- Reducing memory demands
Talking Mats improve quality of information by:
- Handing over control to the thinker

- Providing a structured framework for open questions

- Reducing anxiety

- Supporting people to express how they really feel.

Card Resource

This is our original, low-tech communication device.

Specially designed symbols that are produced in no tear, wipe clean material.

Packaged in clear plastic wallets with quick reference postcards and guidance booklet.

Health & Wellbeing and Consulting Children and Young People Resources include mat and Fair Trade bag.

Digital Talking Mats

This new version of Digital Talking Mats has the following features:

A video to introduce the platform and how to use it.

Access to over 30 topics, depending on level of subscription.

Ability to choose top scale.

Ability to upload your own images to use in a mat.

Once trained, you have the ability to create and keep a 'Personalised Mat' to use again.

Once trained, you can gain access to our post-training and Advanced Resources.

Symbols can appear with text or without text.

Additional accessibility features.

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What is a Talking Mat? - Improving Communication, Improving Lives

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Talking Mats is a social enterprise whose vision is to improve the lives of people with communication difficulties. Improving communication and improving lives.

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Alexia - supporting carers with technology 

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Alexia - supporting carers with technology 

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Dementia training dates Oct 25 - March 26

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Dementia training dates Oct 25 - March 26

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Developed by Bangor University

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Developed by the University of Worcester - association of Dementia Studies

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Get involved – Help us work out priorities for future research by completing a short feedback survey about our Crossing the Line resources.

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Our independent dementia advocacy project enables people with a diagnosis of dementia to access the services and support you need and to have a voice in decisions that are being made. It's also to support you through situations where you may be abused and need to find safeguarding solutions.

The advocacy we offer is independent of any other service people living with dementia use. This means the person with dementia is at the heart of the decision making process, and we can support and represent them without any conflict of interest.

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Our dementia advocacy project is about enabling people with dementia access to services and support that they need and to have a voice in decisions that are being made.

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Woody's Lodge provides support to veterans, Emergency Services leavers & their families. Contact the team today to see how we can help.

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Do you believe that music should be an integral part of dementia care? Please join our campaign at musicfordementia.org.uk We are m4d Radio. A group of 5 themed radio stations available 24 hours a day, 365 days a year playing music that evokes memories. Choose your era below, listen and enjoy...

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RemArc

Your browser currently has JavaScript disabled. To use the application, you must enable JavaScript in your browser.

Welcome to the BBC Reminiscence Archive. This archive provides access to a selection of content from the BBC Archives, designed to support reminiscence therapy.

The principle of reminiscence therapy is to assist people who have dementia to interact and converse in a natural way by stimulating their long-term memory with material from the past. It is often the case that long-term memory can still function when the person's working (short-term) memory is degraded. Tapping into long-term memory can make it possible once again for them to enjoy interacting with others, through their stories.

A number of reminiscence systems have been developed for people with dementia, based on photographs, photo books, boxes of objects and materials and interactive computer applications. The BBC wants to contribute to this growing set of supports for people with dementia and their carers by drawing on the enormous fund of photos, videos, and sound clips in its archives.

For more information about dementia, please visit The Alzheimer's Society or Alzheimer Scotland or bbc.co.uk/dementia

The BBC Reminiscence Archive (or RemArc) was developed by the BBC, Dundee University and University of St Andrews, and built by Atos as a tool to support people with dementia and carers.
Contact us about RemArc

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Welcome to iSupport | iSupport Dementia Courses

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These websites were developed as part of the iSupport research programme, a collaboration led by Professor Gill Windle at Bangor University. They were copied from the online iSupport for dementia programme iSupportForDementia.org Version 1.0, World Health Organisation, Copyright (2018). Adapted and translated with kind permission from the WHO.

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Take Note is a set of music resources and strategies for the carers of older people, including those with dementia. It includes a set of cards and this website.

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Provides support to all carers across the region

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Vital carers services in Cardiff and the Vale of Glamorgan

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TuVida has secured contracts to deliver vital services for unpaid carers in Cardiff and the Vale of Glamorgan.

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The experience of the senses in dementia

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The experience of the senses in dementia

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Cardiff and Vale University Health Board

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Carers look after someone - a relative, friend or neighbour - who is ill, frail or disabled and cannot manage on their own or who is unable to manage without help because they are elderly, disabled by physical or mental ill health, learning disability, drug or alcohol problem or have a long-term illness.

They may be providing a caring role for a couple of hours a week or caring for someone over 30 hours a week; everyone is entitled to help and support.

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Carers look after someone - a relative, friend or neighbour - who is ill, frail or disabled and cannot manage on their own or who is unable to manage without help because they are elderly, disabled by physical or mental ill health, learning disability, drug or alcohol problem or have a long-term illness.

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This page is also available in Welsh (Cymraeg) (PDF, 507KB)

In 2021, 81.7% (48.7 million) of usual residents in England and Wales identified their ethnic group within the high-level "White" category, a decrease from 86.0% (48.2 million) in the 2011 Census.

As part of the "White" ethnic group, 74.4% (44.4 million) of the total population in England and Wales identified their ethnic group as "English, Welsh, Scottish, Northern Irish or British", this is a continued decrease from 80.5% (45.1 million) in 2011, and from 87.5% (45.5 million) who identified this way in 2001.

The next most common high-level ethnic group was "Asian, Asian British or Asian Welsh" accounting for 9.3% (5.5 million) of the overall population, this ethnic group also saw the largest percentage point increase from 2011, up from 7.5% (4.2 million people).

Across the 19 ethnic groups, the largest percentage point increase was seen in the number of people identifying through the "White: Other White" category (6.2%, 3.7 million in 2021, up from 4.4%, 2.5 million in 2011), this response option allows people to specify their ethnic group through writing it in; the increase may be partly explained by the new search-as-you-type functionality introduced for Census 2021, making it easier for people to self-define when completing the census online.

Large changes were also seen in the numbers of people identifying their ethnic group as "Other ethnic group: Any other ethnic group" (1.6%, 924,000 in 2021, up from 0.6%, 333,000 in 2011), and "Black, Black British, Black Welsh, Caribbean or African: African" (2.5%, 1.5 million in 2021, up from 1.8%, 990,000); both ethnic groups had the option to write in their response.

In England and Wales, 10.1% (2.5 million) of households consisted of members identifying with two or more different ethnic groups, an increase from 8.7% (2.0 million) in 2011.

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2. Ethnic groups in England and Wales

The ethnic group question's two stages

Since 1991, the census for England and Wales has included a question about ethnic group.

The ethnic group question has two stages. Firstly, a person identifies through one of the following five high-level ethnic groups:

Secondly, a person identifies through one of the 19 available response options, which include categories with write-in response options. For more information on question structure, see Section 9: Measuring the data.

High-level ethnic groups in England and Wales

"White" remained the largest high-level ethnic group in England and Wales; 81.7% (48.7 million) of usual residents identified this way in 2021, a decrease from 86.0% (48.2 million) in 2011.

Figure 1: The percentage of the population in all high-level ethnic groups, excluding "White", has increased since 2011

Ethnic group distribution (high-level categories), 2011 and 2021, England and Wales

Notes:

1. We have excluded the "White" ethnic group from this chart to make it easier to clearly see the differences for the four high-level ethnic groups that account for a smaller percentage of the overall population.

2. We have presented ethnic group categories alphabetically (except for "Other ethnic group").

3. "Asian Welsh" and "Black Welsh" ethnic groups were included on the census questionnaire in Wales only, these categories were new for 2021.

Download the data

The largest increases were seen in the number of people who identified their ethnic group within the "Asian, Asian British or Asian Welsh" category (9.3%, 5.5 million in 2021, up from 7.5%, 4.2 million in 2011) and within "Other ethnic group" (2.1%, 1.3 million people in 2021, up from 1.0%, 564,000 in 2011).

There are many factors that may be contributing to the changing ethnic composition of England and Wales, such as differing patterns of ageing, fertility, mortality, and migration. Changes may also be caused by differences in the way individuals chose to self-identify between censuses.

The 19 ethnic groups in England and Wales

Within the "White" ethnic group, 74.4% (44.4 million) of usual residents in England and Wales identified their ethnic group as "English, Welsh, Scottish, Northern Irish or British". This was a decrease from 80.5% (45.1 million) in 2011, and a continued decrease from 2001, when 87.5% (45.5 million) identified as "White: British".

There was a decrease in the number of people identifying their ethnic group as "White: Irish", from 531,000 (0.9%) in 2011 to 507,000 (0.9%) in 2021.

The remaining 17 ethnic groups across the 19 available response options all increased in size.

Figure 2: Ethnic minority groups, 2011 and 2021, England and Wales

Notes:

1. We have excluded the "White: English, Welsh, Scottish, Northern Irish or British" ethnic group from this chart. This is to make it easier to clearly see the differences for the 18 ethnic minority groups that account for a smaller percentage of the overall population.

2. We have presented the five high-level categories alphabetically. The 18 ethnic groups are then presented alphabetically within each high-level ethnic group category. In each case, "other" options are listed last.

3. There was no "Roma" ethnic group tick-box in 2011.

Download the data

In 2021, there was a new response option for "Roma" within the high-level "White" ethnic group. Overall, 0.2% (101,000) of usual residents identified this way, with the percentage higher in England (0.2%, 99,000) than in Wales (0.1%, 2,000).

The three largest increases since 2011 were seen in the number of people identifying through:

"White: Other White" (6.2%, 3.7 million in 2021, up from 4.4%, 2.5 million in 2011)

"Other ethnic group: Any other ethnic group" (1.6%, 924,000 in 2021, up from 0.6%, 333,000 in 2011)

"Black, Black British, Black Welsh, Caribbean or African: African" (2.5%, 1.5 million in 2021, up from 1.8%, 990,000 in 2011).

These were three of the six available response options that allowed people to specify their ethnic group through writing it in. In part, the increases seen to these ethnic groups may be explained by the new Search-as-you-type functionality for Census 2021, making it easier for people to self-define when completing the census online.
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3. Detailed ethnic group classification

Census 2021 provides insights into 287 ethnic groups

The write-in functionality has enabled us to produce a detailed ethnic group classification in our Ethnic group (detailed) in England and Wales dataset, providing insight for 287 ethnic groups. Further information on how write-in responses are included in the detailed classification for the ethnic group, national identity, language and religion questions can be found in our blog post How am I represented in Census 2021 data?

This section focuses on the three write-in response options that saw the largest change since 2011, as highlighted towards the end of Section 2: Ethnic groups in England and Wales.

Ethnic groups within the "White: Other White" ethnic group

The largest ethnic groups specified within "White: Other White" included "White: Polish", with 614,000 (1.0%) of the overall population identifying this way, and "White: Romanian", with 343,000 people (0.6%) identifying this way.

Ethnic groups within the "Other ethnic group"

The number of people choosing to specify their ethnic group through the "Other ethnic group: Any other ethnic group" write-in response option (924,000, 1.6%) almost tripled since 2011 (333,000, 0.6%). The largest ethnic groups within the "Other ethnic group: Any other ethnic group" write-in response option for England and Wales included "Sikh" (77,000, 0.1%), "Hispanic or Latin American" (76,000, 0.1%) and "Kurdish" (76,000, 0.1%).

Ethnic group is multi-dimensional and complex, as such identities highlighted here may appear multiple times in the detailed classification. For example, 23,000 people identified their ethnic group as "Sikh" within the high-level "Asian, Asian British or Asian Welsh".

Ethnicity is multi-dimensional and subjective, with various ways in which a person may choose to define their ethnic group. This may include common ancestry, elements of culture, identity, religion, language and physical appearance. It is generally accepted that ethnic group does include all these aspects, and others, in combination.

Within Census 2021, people were also asked in a separate voluntary question whether they had religious affiliation. People who describe their ethnicity as Sikh may have also chosen to describe their religion as Sikh, or may have identified through just one or the other, or neither. The number of people in England and Wales who identified as "Sikh" through the religion question was 524,000, (0.9%). Find further information on religious affiliation in our Religion, England and Wales: Census 2021 bulletin.

There are further analyses planned that consider how the variables of ethnic group, national identity, language and religion interact. For more information, please see our Ethnic group, national identity, language and religion analysis plans.

Ethnic groups within the "Black, Black British, Black Welsh, Caribbean or African: African" ethnic group

The new write-in response option for "Black, Black British, Black Welsh, Caribbean or African: African" has allowed insights into specific African backgrounds. The largest ethnic groups specified within this write-in included "Nigerian" (271,000, 0.5%), "Somali" (151,000, 0.3%) and "Ghanaian" (113,000, 0.2%).
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4. How ethnic composition varied across England and Wales

England and Wales

In England the percentage of the population who identified within:

In Wales the percentage of the population who identified within:

Regions of England

London remains the most ethnically diverse region of England and saw an 8.1 percentage point decrease of people who identified as "White: English, Welsh, Scottish, Northern Irish or British" (36.8%, 3.2 million in 2021, down from 44.9%, 3.7 million in 2011). In other regions, the percentages identifying their ethnic group this way ranged between 71.8% (4.3 million) in the West Midlands to 90.6% (2.4 million) in the North East.

Local Authorities

Local authority statistics provide further insight into where ethnic groups tend to be concentrated within England and Wales.

Figure 3: Population by ethnic group, 2021, local authorities in England and Wales

Source: Office for National Statistics - Census 2021

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5. Ethnic groups within households

Census 2021 provides insights into ethnic group composition within the 17.3 million households that had more than one person living in them (69.8% of 24.8 million occupied households). A further 30.2% (7.5 million) of households were occupied by one person.

Looking in more detail at multiple-person households, in 59.7% (14.8 million) of total households in England and Wales, all household members identified with the same ethnic group. This was a decrease from 61.1% (14.3 million households) in 2011.

In 10.1% (2.5 million) of households in England and Wales, two or more ethnic groups were represented. This is an increase from 2011 (8.7%, 2.0 million).

Census 2021 provides further insight into three combinations of ethnic group identification and relationships, within households where members report different ethnic groups:

"Ethnic groups differ within partnerships" (5.7%, 1.4 million households with more than one person)

"Ethnic groups differ between generations but not within partnerships" (1.8%, 436,000)

any other combination of multiple ethnic identities between household members with other types of relationship, including those who are not related, such as friends (2.6%, 649,000)

Ethnic groups within households across England and Wales

In England, 10.4% of total households were multiple-ethnic group households (2.4 million households), compared with 5.3% in Wales (71,000 households). Within English regions, the percentage of multiple-ethnic group households ranged between 4.1% of total households in the North East (48,000 households) and 22.3% (763,000 households) in London.

The interactive tool displays data on how ethnic group composition within households varies at a local level.

Figure 4: The percentage of households containing multiple ethnic groups varies by local authority

Household ethnic composition, 2021, local authorities in England and Wales

Download the data
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More detailed data and analysis on ethnicity will be published in the coming months, alongside the release of multivariate data. Read more about our Ethnic group, national identity, language and religion analysis plans and the Release plans for Census 2021 more generally.
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Ethnic group

The ethnic group that the person completing the census feels they belong to. This could be based on their culture, family background, identity or physical appearance.

Respondents could choose one out of 19 tick-box response categories, including write-in response options.

High-level ethnic group

This refers to the first stage of the two-stage ethnic group question. High-level groups refer to the first stage where the respondent identifies through one of the following options:

Multiple ethnic groups in households

Classifies households by whether members identify as having the same or different ethnic groups.

If multiple ethnic groups are present, this identifies whether they differ between generations or partnerships within the household.

Usual resident

A usual resident is anyone who on Census Day, 21 March 2021 was in the UK and had stayed or intended to stay in the UK for a period of 12 months or more, or had a permanent UK address and was outside the UK and intended to be outside the UK for less than 12 months.
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Reference date

The census provides estimates of the characteristics of all people and households in England and Wales on Census Day, 21 March 2021. It is carried out every 10 years and gives us the most accurate estimate of all the people and households in England and Wales.

We are responsible for carrying out the census in England and Wales, but will also release outputs for the UK in partnership with the Welsh Government, the National Records of Scotland (NRS) and the Northern Ireland Statistics and Research Agency (NISRA). The census in Northern Ireland was also conducted on 21 March 2021, whereas Scotland's census was moved to 20 March 2022. All UK census offices are working closely together to understand how this difference in reference dates will impact UK-wide population and housing statistics, in terms of both timing and scope.

Response rate

The person response rate is the number of usual residents for whom individual details were provided on a returned questionnaire, divided by the estimated usual resident population.

The person response rate for Census 2021 was 97% of the usual resident population of England and Wales, and over 88% in all local authorities. Most returns (89%) were received online. The response rate exceeded our target of 94% overall and 80% in all local authorities.

Further information on question-specific response rates will be published in a separate report later this year.

Ethnic group question

To see the ethnic group question on the household, individual and Welsh questionnaires, visit our Census 2021 paper questionnaires page.

Ethnic groups in the detailed ethnic group classification

An ethnic group will be shown in the detailed classification if the number of people who identified with the group within a write-in response option are large enough to disaggregate from other ethnic groups. For this reason, some ethnic groups appear in multiple high-level categories. Where the number of people identifying with an ethnic group are small enough for individuals to be identified, an ethnic group will be aggregated with other ethnic groups in the same write-in response option.
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10. Strengths and limitations

Quality considerations along with the strengths and limitations of Census 2021, more generally, can be found in the Quality and Methodology Information (QMI) for Census 2021. Read more about the specific quality considerations for Ethnic group, national identity, language and religion.

Further information on our quality assurance processes is provided in our Maximising the quality of Census 2021 population estimates methodology.
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Ethnic group, England and Wales - Office for National Statistics

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This page is also available in Welsh (Cymraeg) (PDF, 507KB) In 2021, 81.7% (48.7 million) of usual residents in England and Wales identified their ethnic group within the high-level "White" category, a decrease from 86.0% (48.2 million) in the 2011 Census.

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The number of older people, including those living with dementia, is rising, as younger age mortality declines. However, the age-specific incidence of dementia has fallen in many countries, probably because of improvements in education, nutrition, health care, and lifestyle changes. Overall, a growing body of evidence supports the nine potentially modifiable risk factors for dementia modelled by the 2017 Lancet Commission on dementia prevention, intervention, and care: less education, hypertension, hearing impairment, smoking, obesity, depression, physical inactivity, diabetes, and low social contact. We now add three more risk factors for dementia with newer, convincing evidence. These factors are excessive alcohol consumption, traumatic brain injury, and air pollution. We have completed new reviews and meta-analyses and incorporated these into an updated 12 risk factor life-course model of dementia prevention. Together the 12 modifiable risk factors account for around 40% of worldwide dementias, which consequently could theoretically be prevented or delayed. The potential for prevention is high and might be higher in low-income and middle-income countries (LMIC) where more dementias occur.

Our new life-course model and evidence synthesis has paramount worldwide policy implications. It is never too early and never too late in the life course for dementia prevention. Early-life (younger than 45 years) risks, such as less education, affect cognitive reserve; midlife (45-65 years), and later-life (older than 65 years) risk factors influence reserve and triggering of neuropathological developments. Culture, poverty, and inequality are key drivers of the need for change. Individuals who are most deprived need these changes the most and will derive the highest benefit.

Policy should prioritise childhood education for all. Public health initiatives minimising head injury and decreasing harmful alcohol drinking could potentially reduce young-onset and later-life dementia. Midlife systolic blood pressure control should aim for 130 mm Hg or lower to delay or prevent dementia. Stopping smoking, even in later life, ameliorates this risk. Passive smoking is a less considered modifiable risk factor for dementia. Many countries have restricted this exposure. Policy makers should expedite improvements in air quality, particularly in areas with high air pollution.

We recommend keeping cognitively, physically, and socially active in midlife and later life although little evidence exists for any single specific activity protecting against dementia. Using hearing aids appears to reduce the excess risk from hearing loss. Sustained exercise in midlife, and possibly later life, protects from dementia, perhaps through decreasing obesity, diabetes, and cardiovascular risk. Depression might be a risk for dementia, but in later life dementia might cause depression. Although behaviour change is difficult and some associations might not be purely causal, individuals have a huge potential to reduce their dementia risk.

In LMIC, not everyone has access to secondary education; high rates of hypertension, obesity, and hearing loss exist, and the prevalence of diabetes and smoking are growing, thus an even greater proportion of dementia is potentially preventable.

Amyloid-β and tau biomarkers indicate risk of progression to Alzheimer's dementia but most people with normal cognition with only these biomarkers never develop the disease. Although accurate diagnosis is important for patients who have impairments and functional concerns and their families, no evidence exists to support pre-symptomatic diagnosis in everyday practice.

Our understanding of dementia aetiology is shifting, with latest description of new pathological causes. In the oldest adults (older than 90 years), in particular, mixed dementia is more common. Blood biomarkers might hold promise for future diagnostic approaches and are more scalable than CSF and brain imaging markers.

Wellbeing is the goal of much of dementia care. People with dementia have complex problems and symptoms in many domains. Interventions should be individualised and consider the person as a whole, as well as their family carers. Evidence is accumulating for the effectiveness, at least in the short term, of psychosocial interventions tailored to the patient's needs, to manage neuropsychiatric symptoms. Evidence-based interventions for carers can reduce depressive and anxiety symptoms over years and be cost-effective.

Keeping people with dementia physically healthy is important for their cognition. People with dementia have more physical health problems than others of the same age but often receive less community health care and find it particularly difficult to access and organise care. People with dementia have more hospital admissions than other older people, including for illnesses that are potentially manageable at home. They have died disproportionately in the COVID-19 epidemic. Hospitalisations are distressing and are associated with poor outcomes and high costs. Health-care professionals should consider dementia in older people without known dementia who have frequent admissions or who develop delirium. Delirium is common in people with dementia and contributes to cognitive decline. In hospital, care including appropriate sensory stimulation, ensuring fluid intake, and avoiding infections might reduce delirium incidence.

Acting now on dementia prevention, intervention, and care will vastly improve living and dying for individuals with dementia and their families, and thus society.

Introduction

Worldwide around 50 million people live with dementia, and this number is projected to increase to 152 million by 2050,

rising particularly in low-income and middle-income countries (LMIC) where around two-thirds of people with dementia live.

Dementia affects individuals, their families, and the economy, with global costs estimated at about US$1 trillion annually.

We reconvened the 2017 Lancet Commission on dementia prevention, intervention, and care to identify the evidence for advances likely to have the greatest impact since our 2017 paper and build on its work. Our interdisciplinary, international group of experts presented, debated, and agreed on the best available evidence. We adopted a triangulation framework evaluating the consistency of evidence from different lines of research and used that as the basis to evaluate evidence. We have summarised best evidence using, where possible, good- quality systematic reviews, meta-analyses, or individual studies, where these add important knowledge to the field. We performed systematic literature reviews and meta-analyses where needed to generate new evidence for our analysis of potentially modifiable risk factors for dementia. Within this framework, we present a narrative synthesis of evidence including systematic reviews and meta-analyses and explain its balance, strengths, and limitations. We evaluated new evidence on dementia risk in LMIC; risks and protective factors for dementia; detection of Alzheimer's disease; multimorbidity in dementia; and interventions for people affected by dementia.

Nearly all the evidence is from studies in high-income countries (HIC), so risks might differ in other countries and interventions might require modification for different cultures and environments. This notion also underpins the critical need to understand the dementias related to life-course disadvantage-whether in HICs or LMICs.

The fastest growing demographic group in HIC is the oldest adults, those aged over 90 years. Thus a unique opportunity exists to focus on both human biology, in this previously rare population, as well as on meeting their needs and promoting their wellbeing.

Prevention of dementia

The number of people with dementia is rising. Predictions about future trends in dementia prevalence vary depending on the underlying assumptions and geographical region, but generally suggest substantial increases in overall prevalence related to an ageing population. For example, according to the Global Burden of Diseases, Injuries, and Risk Factors Study, the global age-standardised prevalence of dementia between 1990 and 2016 was relatively stable, but with an ageing and bigger population the number of people with dementia has more than doubled since 1990.

However, in many HIC such as the USA, the UK, and France, age-specific incidence rates are lower in more recent cohorts compared with cohorts from previous decades collected using similar methods and target populations ( figure 1) and the age-specific incidence of dementia appears to decrease.

All-cause dementia incidence is lower in people born more recently,

probably due to educational, socio-economic, health care, and lifestyle changes., However, in these countries increasing obesity and diabetes and declining physical activity might reverse this trajectory.

, In contrast, age-specific dementia prevalence in Japan, South Korea, Hong Kong, and Taiwan looks as if it is increasing, as is Alzheimer's in LMIC, although whether diagnostic methods are always the same in comparison studies is unclear.,

In our first report, the 2017 Commission described a life-course model for potentially modifiable risks for dementia. Life course is important when considering risk, for example, obesity and hypertension in midlife predict future dementia, but both weight and blood pressure usually fall in later life in those with or developing dementia, so lower weight and blood pressure in later life might signify illness, not an absence of risk., , , We consider evidence on other potential risk factors and incorporate those with good quality evidence in our model.

Figure 2 summarises possible mechanisms of protection from dementia, some of which involve increasing or maintaining cognitive reserve despite pathology and neuropathological damage. There are different terms describing the observed differential susceptibility to age-related and disease-related changes and these are not used consistently.

, A consensus paper defines reserve as a concept accounting for the difference between an individual's clinical picture and their neuropathology. It, divides the concept further into neurobiological brain reserve (eg, numbers of neurones and synapses at a given timepoint), brain maintenance (as neurobiological capital at any timepoint, based on genetics or lifestyle reducing brain changes and pathology development over time) and cognitive reserve as adaptability enabling preservation of cognition or everyday functioning in spite of brain pathology.

Cognitive reserve is changeable and quantifying it uses proxy measures such as education, occupational complexity, leisure activity, residual approaches (the variance of cognition not explained by demographic variables and brain measures), or identification of functional networks that might underlie such reserve.

Early-life factors, such as less education, affect the resulting cognitive reserve. Midlife and old-age risk factors influence age-related cognitive decline and triggering of neuropathological developments. Consistent with the hypothesis of cognitive reserve is that older women are more likely to develop dementia than men of the same age, probably partly because on average older women have had less education than older men. Cognitive reserve mechanisms might include preserved metabolism or increased connectivity in temporal and frontal brain areas., , , , People in otherwise good physical health can sustain a higher burden of neuropathology without cognitive impairment.

Culture, poverty, and inequality are important obstacles to, and drivers of, the need for change to cognitive reserve. Those who are most deprived need these changes the most and will derive the highest benefit from them.

Specific potentially modifiable risk factors for dementia

Risk factors in early life (education), midlife (hypertension, obesity, hearing loss, traumatic brain injury, and alcohol misuse) and later life (smoking, depression, physical inactivity, social isolation, diabetes, and air pollution) can contribute to increased dementia risk ( table 1). Good evidence exists for all these risk factors although some late-life factors, such as depression, possibly have a bidirectional impact and are also part of the dementia prodrome.

In the next section, we briefly describe relevant newly published and illustrative research studies that add to the 2017 Commission's evidence base, including risks and, for some, mitigation. We have chosen studies that are large and representative of the populations, or smaller studies in areas where very little evidence exists. We discuss them in life-course order and within the life course in the order of magnitude of population attributable factor.

Education and midlife and late-life cognitive stimulation

Education level reached

Higher childhood education levels and lifelong higher educational attainment reduce dementia risk., , , New work suggests overall cognitive ability increases, with education, before reaching a plateau in late adolescence, when brain reaches greatest plasticity; with relatively few further gains with education after age 20 years. This suggests cognitive stimulation is more important in early life; much of the apparent later effect might be due to people of higher cognitive function seeking out cognitively stimulating activities and education. It is difficult to separate out the specific impact of education from the effect of overall cognitive ability,, and the specific impact of later-life cognitive activity from lifelong cognitive function and activity.,

Cognitive decline

The use it or lose it hypothesis suggests that mental activity, in general, might improve cognitive function. People in more cognitively demanding jobs tend to show less cognitive deterioration before, and sometimes after retirement than those in less demanding jobs.

, One systematic review of retirement and cognitive decline found conflicting evidence.

Subsequently, a 12-year study of 1658 people found older retirement age but not number of years working, was associated with lower dementia risk. Those retiring because of ill health had lower verbal memory and fluency scores than those retiring for other reasons. Another study found a two-fold increase in episodic memory loss attributable to retirement (n=18 575, mean age 66 years), compared to non-retirees, adjusting for health, age, sex, and wealth. Similarly, in a cohort of 3433 people retiring at a mean age of 61 years, verbal memory declined 38% (95% CI 22-60) faster than before retirement. In countries with younger compared to higher retirement ages, average cognitive performance drops more.

Cognitive interventions in normal cognition and mild cognitive impairment

Three systematic reviews in the general population found no evidence of generalised cognition improvement from specific cognitive interventions, including computerised cognitive training, although the domain trained might improve.

Traumatic brain injury (TBI)

The International Classification of Disease (ICD) defines mild TBI as concussion and severe TBI as skull fracture, oedema, brain injury or bleed. Single, severe TBI is associated in humans, and mouse models, with widespread hyperphosphorylated tau pathology, and mice with APOE ε4 compared to APOE ε3 allele have more hippocampal hyper-phosphorylated tau after TBI., TBI is usually caused by car, motorcycle, and bicycle injuries; military exposures; boxing, horse riding, and other recreational sports; firearms; and falls.

A nationwide Danish cohort study of nearly 3 million people aged 50 years or older, followed for a mean of 10 years, found an increased dementia (HR 1·2, 95% CI 1·2-1·3) and Alzheimer's disease risk (1·2, 1·1-1·2). Dementia risk was highest in the 6 months after TBI (4·1, 3·8-4·3) and increased with number of injuries in people with TBI (one TBI 1·2, 1·2-1·3; ≥5 TBIs 2·8, 2·1-3·8). Risk was higher for TBI than fractures in other body areas (1·3, 1·3-1·3) and remained elevated after excluding those who developed dementia within 2 years after TBI, to reduce reverse causation bias.

Similarly, a Swedish cohort of over 3 million people aged 50 years or older, found TBI increased 1-year dementia risk (OR 3·5, 95% CI 3·2-3·8); and risk remained elevated, albeit attenuated over 30 years (1·3, 1·1-1·4).

ICD defined single mild TBI increased the risk of dementia less than severe TBI and multiple TBIs increased the risk further (OR 1·6, 95% CI 1·6-1·7 for single TBI; 2·1, 2·0-2·2 for more severe TBI; and 2·8, 2·5-3·2 for multiple TBI). A nested case control study of early onset clinically diagnosed Alzheimer's disease within an established cohort also found TBI was a risk factor, increasing with number and severity. A stronger risk of dementia was found nearer the time of the TBI, leading to some people with early-onset Alzheimer's disease.

Military veterans have a high risk of occupational TBI, and formal record keeping allows long-term follow-up. A study of 178 779 veterans with TBI with propensity-matched veterans without TBI found dementia risk was associated with TBI severity (HR 2·4, 95% CI 2·1-2·7 for mild TBI without loss of consciousness; 2·5, 2·3-2·8 for mild TBI with loss of consciousness; and 3·8, 3·6-3·9 for moderate to severe TBI). Similarly women veterans with TBI had increased risk of dementia compared to those without TBI (1·5, 1·0-2·2).

A cohort study of 28 815 older adults with concussion, found the risk of dementia doubled, with 1 in 6 developing dementia over a mean follow-up of 3·9 years, although those taking statins had a 13% reduced risk of dementia compared to those who were statin-free. They suggest future RCTs as statins might mitigate injury-related brain oedema, oxidative stress, amyloid protein aggregation, and neuroinflammation.

Physical inactivity, exercise, and fitness

Studies of physical activity are complex. Patterns of physical activity change with age, generation, and morbidity and are different across sex, social class, and cultures. The studies suggest a complicated relationship with the potential for both risk reduction and reverse causation.

Since the 2017 Commission, the HUNT study of 28 916 participants aged 30-60 years has been published, reinforcing the previous literature in this area. At least weekly midlife moderate-to-vigorous physical activity (breaking into a sweat) was associated with reduced dementia risk over a 25-year period of follow-up (HR 0·8, 95% CI 0·6-1·1) but the confidence intervals were wide. In contrast the Whitehall Study reporting on the 28-year follow-up of 10 308 people, found that more than 2·5 hours of self-reported moderate-to-vigorous physical activity per week, lowered dementia risk over 10, but not 28 years. Very long-term studies are unusual; however, one 44-year study recruited 191 women (mean age 50) purposively to be representative of the Swedish population and reported that 32% of the participants with low baseline peak fitness, 25% with medium, and 5% with high fitness developed dementia (high vs medium HR 0·1, 95% CI 0·03-0·5, low vs medium 1·4, 0·7-2·8).

Trials of exercise

Since the 2017 Commission several meta-analyses and systematic reviews have been published with three high quality meta-analyses which we include. The first included 39 RCTs with an unclear total number of participants examining moderate or vigorous exercise of any frequency lasting 45-60 min per session in cognitively normal adults aged older than 50 years. This analysis reported global cognitive improvements (standard mean difference [SMD]=0·3, 95% CI 0·2-0·4) for moderate or vigorous resistance (13 studies) or aerobic exercise (18 studies) lasting 45-60 min per session with no difference between them but no effect found for yoga. A second meta-analysis of RCTs in people with mild cognitive impairment found global cognition improved in the intervention group (0·3, 0·1-0·5) with aerobic exercise having a higher effect (0·6, 0·5-0·6). This study did not have dementia as an outcome measure. A third meta-analysis of RCTs of longer term exercise found five studies (four lasting 12 months and one 24 months) with 2878 participants with normal baseline cognition. The incidence of dementia was 3·7% (n=949) for exercisers and 6·1% (n=1017) for controls (random effect RR 0·6, 95% CI 0·3-1·1; fixed effect as no evidence of heterogeneity 0·7, 0·4-1·0). The authors concluded that the study showed no significant effect of exercise for reducing dementia, mild cognitive impairment, or clinically significant cognitive decline but was underpowered. WHO guidelines have been published since the 2017 Commission, suggesting specific activity levels drawing on these, and one further systematic review which considered sex differences on the effect of exercise.,

It concluded the evidence points towards physical activity having a small, beneficial effect on normal cognition, with a possible effect in mild cognitive impairment, mostly due to aerobic exercise.

Evidence about the effect of specific types of exercise, such as progressive muscle resistance training, on dementia risk is scarce.

Overall type 2 diabetes is a clear risk factor for development of future dementia; however, whether any particular medication ameliorates this risk is unclear. Intensive diabetic control does not decrease the risk of dementia.

Smokers are at higher risk of dementia than non-smokers, and at a higher risk of premature death before the age at which they might have developed dementia, introducing some bias and uncertainty in the association between smoking and risk of dementia., Stopping smoking, even when older, reduces this risk. Among 50 000 men aged older than 60 years, stopping smoking for more than 4 years, compared to continuing, substantially reduced dementia risk over the subsequent 8 years (HR 0·9; 95% CI 0·7-1·0). Worldwide, 35% of non-smoking adults and 40% of children are estimated to be exposed to second-hand smoke; although literature on the impact of this exposure and dementia risk is scarce. One study indicated that in women aged 55-64 years, second-hand smoke exposure was associated with more memory deterioration and the risk increased with exposure duration even after controlling for other confounding factors.

Social contact

Despite clear cultural variation in the meaning and perception of social isolation, findings of protective effect of more social contact are largely consistent in different settings and for either sex across the studies and meta-analyses., ,

Mechanisms by which sleep might affect dementia remain unclear, but sleep disturbance has been linked with β-amyloid (Aβ) deposition,, reduced glymphatic clearance pathways activation, low grade inflammation, increased Tau, hypoxia, and cardiovascular disease. Sleep disturbance is hypothesised to increase inflammation which raises Aβ burden, leading to Alzheimer's disease and further sleep disturbance.

The postulated mechanisms of reduced sleep leading to accumulation of Alzheimer's type pathology is inconsistent with the evidence that both more sleep and less sleep are associated with increased risk of dementia. New onset late-life sleep disturbance, a few years before clinical dementia, might be part of the natural history of the dementia syndrome, appearing to be a risk factor, or reflect other disorders, for example, mood disturbances or cardiovascular disease.,

Hypnotic use might increase risks although this is unclear and a 2018 study suggests that findings of a connection were related to reverse causality and confounders. When benzodiazepine use was considered, in one study, sleep length was no longer significant but not in all studies. Those taking hypnotics were at greater risk of dementia than those who did not regardless of sleep duration. Medication for sleep disturbance might be harmful and benzodiazepines are associated with falls, hospital admissions, and possibly dementia.,

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Dementia prevention, intervention, and care: 2020 report of the Lancet Commission

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The number of older people, including those living with dementia, is rising, as younger age mortality declines. However, the age-specific incidence of dementia has fallen in many countries, probably because of improvements in education, nutrition, health care, and lifestyle changes.

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The World Turned Upside Down: Using theatre to take a realistic look at dementia

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Supporting people with dementia – CAVRPB

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The development of integrated services for older people with complex needs and long-term conditions, including dementia, is one of our key priorities.

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Black and minority ethnic (BME) communities and dementia - SCIE

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More than 25,000 older black and minority ethnic (BME) people live with dementia in the UK, in part due to vascular risk factors such as hypertension often found in African-Caribbean and South Asian UK populations. In other ethnic groups such as Irish and Jewish, there is a demographically-older…

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DSDC has created a handful of dementia resources covering information about dementia in Arabic, Bengali, Chinese, English, Hindi, Punjab and Urdu.← Return to Resources

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Rare Dementia support website

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I want to work with and help those who are trying to help me and my friends. I am particularly impressed with what the Young Dementia Network has achieved with limited resources for a group of people so often overlooked

- Hilary Doxford, living with young onset dementia and Young Dementia Network steering group member

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Community for young onset dementia - Young Dementia Network

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I want to work with and help those who are trying to help me and my friends.

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Equality and diversity groups

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REF works to eliminate inequity in sporting opportunities and participation levels in physical activity for ethnic minority people across Wales, especially women and girls. We run physical activity and sport sessions in Cardiff, Newport, Swansea and Wrexham in North Wales.

We set up these activities as our beneficiaries suffer from the highest health inequalities due to lack of participation in sport and physical activity. This is often due to cultural, religious and language barriers. This was confirmed by the data collected and analysed in July 2018 that gave the following results from the registration forms of 760 beneficiaries from our MEEA Project:

Research has found that BME women and girls aged 17 to 44, especially Muslims, suffer from the highest inequity in sport. We address this lack of participation in sport and physical activity by providing activities which eliminate barriers due to culture, religion and social backgrounds and by encouraging them to take regular physical activity or participate in sport.

1. Swimming club

2. Walking group

3. Yoga

4. Netball

5. Ramadan Sport Project (once a year)

6. Girls Football

7. Butetown Fitness Group

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Sport & Physical Activity | Race Equality First

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REF works to eliminate inequity in sporting opportunities and participation levels in physical activity for ethnic minority people across Wales, especially women and girls. We run physical activity and sport sessions in Cardiff, Newport, Swansea and Wrexham in North Wales.

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Environments for Ageing and Dementia Design Assessment Tool (EADDAT)

DSDC is proud to bring you 'Environments for Ageing and Dementia Design Assessment Tool' (EADDAT); an international benchmark of quality design for an ageing population and those living with dementia. The Tool is designed to be accessible and to support anyone who wants to make the environments in which they live, work, or play, more inclusive for an ageing population, and people living with dementia. With versions of EADDAT specifically designed for a variety of building typologies, and tiers reflecting the scale of the intervention or project, there is a version of the Tool for everyone.

EADDAT is informed by the most current research on ageing and dementia design. It recognises that the global population is ageing, and with it we expect an increase in the prevalence of dementia. It is therefore more important than ever to ensure we design for everyone, and for the future. EADDAT will support you to make that change.

Below are useful resources that provide information about EADDAT and how to use it. You can find the tools through the DSDC resources page.

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EADDAT Getting Started - Dementia Services Development Centre

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DSDC is proud to bring you 'Environments for Ageing and Dementia Design Assessment Tool' (EADDAT); an international benchmark of quality design for an ageing population and those living with dementia. The Tool is designed to be accessible and to support anyone who wants to make the environments in which they live, work, or play, more inclusive for an ageing population, and people living with dementia.

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Free to download

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Select Your Cookie Preferences

We use cookies and similar tools that are necessary to enable you to make purchases, to enhance your shopping experiences and to provide our services, as detailed in our Cookie Notice. We also use these cookies to understand how customers use our services (for example, by measuring site visits) so we can make improvements.

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Wandering the Wards: An Ethnography of Hospital Care and its Consequences for People Living with Dementia (Routledge Studies in Health and Medical Anthropology)

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Wandering the Wards: An Ethnography of Hospital Care and its Consequences for People Living with Dementia (Routledge Studies in Health and Medical Anthropology) eBook : Featherstone, Katie, Northcott, Andy: Amazon.co.uk: Kindle Store

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This page gives a visual overview of a number of equality, diversity and inclusion (EDI) events that we often mark and celebrate at Imperial.

We have also created a shared calendar of EDI days, weeks and months that you can add to your own calendar application, such as Outlook. You can just view this EDI calendar online, or you can copy this link to the ICS calendar file and subscribe to the calendar in Outlook. Microsoft has a help article about subscribing to a calendar in Outlook. (We recommend subscribing to the calendar, so it stays updated, rather than importing the ICS file.)

Dates and details of events can often change. If you notice anything incorrect on these calendars, or if you have any suggestions about things to add, then please email the EDI Centre.

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Equality, diversity and inclusion calendar

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This page gives a visual overview of a number of equality, diversity and inclusion (EDI) events that we often mark and celebrate at Imperial. We have also created a shared calendar of EDI days, weeks and months that you can add to your own calendar application, such as Outlook.

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How to access

In order to access the e-ELCA programme, you will need an elfh account. If you do not have one, then you can register by selecting the Register button below.

To view the e-ELCA programme, select the View button below. If you already have an account with elfh, you will also be able to login and enrol on the programme from the View button.

NHS healthcare staff in England

The e-ELCA programme is also available to NHS healthcare staff via the Electronic Staff Record (ESR). Accessing this elearning via ESR means that your completions will transfer with you throughout your NHS career.

Further details are available here.

Not an NHS organisation?

If you are not an NHS health or care organisation and therefore do not qualify for free access elfh Hub, you may be able to access the service by creating an OpenAthens account.

To check whether or not you qualify for free access via OpenAthens, you can view the eligibility criteria and register on the ' OpenAthens ' portal.

Access for care home or hospice staff

To register for the e-ELCA programme, select the ' Register ' button in the top right hand corner of the page. Select the option 'I am a care home or hospice worker' then enter your care home / hospice name or postcode and select it from the options available in the drop down list. Finally enter your care home / hospice registration code and select 'Register'. You may need to see your employer to get this code.

If your employer does not have a code, then they need to contact the elfh Support Team. The Support Team can either give the employer the registration code or arrange a bulk upload of all staff.

Detailed instructions on how to gain access are available here.

Access for social care professionals

Access to elfh content is available to all social care professionals in England whose employers are registered with the Skills for Care Adult Social Care Workforce Data Set (ASC-WDS). Every employer providing ASC-WDS workforce information to Skills for Care has been given a user registration code for their staff. This code enables you to self-register for access to e-ELCA. Please contact your employer for more details about the registration code.

For information about registering your organisation with the NMDS-SC your employer should access: https://www.skillsforcare.org.uk/About/Contact-us/Contact-details.aspx#NMDSSC or contact the Skills for Care Support Service via email: ascwds-support@skillsforcare.org.uk or telephone: 0113 241 0969.

If you have a registration code, you can register by clicking here.

Registering large numbers of users

If you are a HR, IT or Practice Manager and would like to register and enrol large numbers of staff within your organisation for access onto the e-ELCAprogramme, please contact elfh directly.

Organisations wishing to use their own LMS

For HR departments wanting to know more about gaining access to courses using an existing Learning Management System please contact elfh directly to express interest.

How to license

In the event that you do not qualify for free access to the e-ELCAprogramme, you are able to license access through eIntegrity, a community-interest company established for this purpose.
You can check whether or not you qualify for free access by clicking on the 'Register' button above.

For more information on the licensing options available for the e-ELCAprogramme, please visit the eIntegrity website.

More information

Please select the following link for more information on how to use the elfh Hub.

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End-of-life Care For All (e-ELCA) - elearning for healthcare

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e-ELCA has been highlighted as a resource to help with implementation of the NICE Guidelines on improving care for people who are in their last days of life.

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*** Please scroll down to access Advance and Future Care Planning Forms, COVID-19 Treatment Escalation Plan and for Covid-19 updates ***

Introduction

This page includes information and links for Advance and Future Care Planning.

For definitions and information videos go to our Advance Care Plan information website.

These resources and forms are for patients and healthcare professionals, with the aim of providing a One Wales sharing and involving approach.

The documents have been peer reviewed by the Advance and Future Care Planning Strategy Group (AFCP) for Wales, which sits under the auspices of the NHS Wales End of Life Care Board and the Deputy Chief Medical Officer for Wales.

The decision making to inform these forms involved extensive patient and carer engagement.

The AFCP Group has patient representation and is pan-Wales. It has also been informed by data collated during a National Future Care Planning Conference in Wales.

Forms

Advance and future care planning is predominantly about frank and honest conversations, delivered compassionately.

Being able to document such discussions, however, is also important, and resources must be instantly recognisable by doctors, nurses and paramedics when they arrive in an emergency.

The title of the form links to the latest version, and we have included a short description for reference and guidance notes where relevant.

Two of the forms can be patient facing, and healthcare professionals in Wales may wish to provide this page link to individuals who wish to fill in such prior decisions.

Both the All Wales Advance Decision to Refuse Treatment Form (ADRT), which is legally binding, and the Statement of Wishes Form (RACPAP), are filled in by patients, usually after explanatory discussions with healthcare professionals, and for clarity, they may be initiated by healthcare practitioners (HCPs) and can be filled in together.

Two further forms are available, a Future Care Planning form that can be filled in by healthcare professionals after attempts at wide consultation with a person's next of kin or independent mental capacity advocate (IMCA), in order to establish and write down what said individual, who currently lacks capacity to make certain decisions, would have wanted or declined.

Only the ADRT is legally binding, the other forms are for decision guidance only, in essence a letter to a future person who may be involved in that individual's urgent care, to elicit prior views, conversations and preferences.

Lasting Power of Attorney for Health and Welfare

We also recommend that individuals in Wales consider appointing a Lasting Power of Attorney (LPA) for Health and Welfare, who can act on their behalf if they lose mental capacity.

An LPA can be one of the more powerful ways to ensure that future treatments are discussed with a trusted individual(s) and it is legally binding.

For information about how to set this up, contact the Office of the Public Guardian.

CCOVID-19 Update: the hospital/inpatient Treatment Escalation Plan (TEP) on this page was developed by Aneurin Bevan University Health Board in April 2020 in response to the current crisis. It has been reviewed by the AFCP Group and the Deputy CMO, and can be used in all inpatient settings in Wales. Again, this is merely a guide for practitioners to indicate what ceilings of treatment have been suggested and discussed previously, and importantly, it is a short-term document for one specific episode of care. Its recommendations may change daily if patient's health/frailty improves or worsens.

Forms

For patients. For HCPs. Where a legally binding form is requested to refuse future interventions.

This is the All Wales Advance Decision to Refuse Treatment form as a PDF. It is possible to type into this PDF, but it requires 'wet signatures' at the end.

This is filled in by patients, and the signing needs to be witnessed and counter-signed. Please see the guidance notes for further information. We have adapted this form with kind permission from a charity, and it is the same format that NHS England recommends and is compliant with the Mental Capacity Act 2005.

For patients. For HCPs. Where a non-legally binding but guidance-based approach is requested to explain wishes and preferences regarding future treatments.

This is not legally binding, but where patients have filled this in and ideally discussed details of it with their HCP, it provides a strong direction for future care and is valuable information in an emergency.

This PDF form can be used to type into, and is signed by the patient (optional, as some people may find the act of signing such a document troubling).

It is signed by a Healthcare Professional who has helped or had sight of the form, in order to then include it in contemporaneous health records and share appropriately.

These forms may be suggested by nurses, doctors and other HCPs, and can be filled in together and filed or scanned into all contemporaneous notes, ideally prominently at the front, together with other forms, such as existing DNACPR forms.

Patients can also prompt their healthcare professional contact to help them fill these forms in.

The above document is short, concise and very specific, and has a very clinical direction. For a widely recognised Advance Care Plan document that has a softer focus and deals not just with medical wishes/views, but also other areas, we recommend using Powys Teaching Health Board's My Life My Wishes documents and guidance notes.

These have won widespread praise, have been through governance processes and are a Bevan Commission Exemplar project. Powys Teaching Health Board has kindly agreed to its use across any part of Wales.

For healthcare professionals: A guidance form that notes down the conversations and views of an individual and those close to that individual, when they lack decisional capacity at the time of assessment.

This form, whilst not legally binding, never-the-less records conversations and views obtained with regard to future care scenarios, and can be useful when an individual lacks decisional capacity.

All efforts should be made to obtain as much information from this individual, and mental capacity can significantly fluctuate even from day to day, so the individual must be at the centre and repeat attempts should be made and documented.

Where this is challenging or not possible despite best efforts, including providing hearing aids or translators, for instance, then those close to the patient should be consulted to help elicit what the person may have wanted in given situations.

An independent mental capacity advocate should be appointed/consulted in situations where next of kin and proxy cannot be found.

For healthcare professionals / hospitals only

A Treatment Escalation Plan (TEP) form has been developed by Aneurin Bevan University Health Board, and has been adapted since the Covid-19 pandemic began.

It has been approved to carry an All Wales NHS Wales logo by the Deputy Chief Medical Officer. It is for use in hospitals and inpatient settings only, and is time-limited to the acute episode in question. Even within that acuter episode the TEP can change (sometimes daily) in light of recovery or deterioration.

Access the TEP form/resources by clicking here (and scroll down to middle of page).

TEPs are not legally binding and should be limited to the episode of care and with frequent reviews. So a person's levels of escalation may change if they improve or deteriorate. TEPs should not be forwarded to community settings, as their initial frailty assessment is linked to the specific admission they pertain to.

They can provide guidance and structured handover of decisions and conversations that have been held, and can reference much longer annotations in the contemporaneous notes.

TEPs should be discussed with patients and/or those close to them, unless there is a risk of causing harm by holding this discussion.

Conclusion

All of the above information can only work well with the appropriate 'scaffolding', so where conversations have occurred in one setting, it is important that they are not 'lost' to other settings and teams.

Appropriate local policies to share this information safely, set out by local health boards should be in place, and community settings, ambulance services and out-of-hours providers must not be left out.

Where there are local Advance and Future Care Plan schemes in place already, these can be continued and adhered to in line with LHB and Trust guidance. We suspect that gradually, however, teams and patients will start using the All Wales documents increasingly, as everyone becomes more accustomed to the forms.

How do people know that there's an Advance Care Plan or DNACPR in my home?

In a home situation, there is the Lions Club Message in Green Bottle scheme, which is well established in Wales: paramedics look for a green sticker inside the front door routinely when they go on house calls, which alerts to the presence of a green bottle in the person's fridge. Then they know there is something important they have to check for.

Anyone can put their DNACPR form or ADRT in a green bottle in the fridge, or a written instruction as to where to find all these important forms in the house - for example, 'My DNACPR is in living room on bottom left shelf.'

The Lions Club supplies the bottles to health centres, doctors' surgeries and chemists, but other green bottles can also be used.

The green Lions Club bottles and stickers are also available directly from Lions Clubs. Call 0845 833 9502 for details of your local club.

Further resources

For more information on advance future care planning, including educational videos and definitions.

For information and video resources on DNACPR conversations.

A brief update video presentation on the current law regarding DNACPR and Advance and Future Care Plans by barrister Alex Ruck Keene.

Module: DNACPR and Advance Care Planning in Wales - updates 2021 (1 CPD credit)

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Please scroll down to access Advance and Future Care Planning Forms, COVID-19 Treatment Escalation Plan and for Covid-19 updates *** This page includes information and links for Advance and Future Care Planning. For definitions and information videos go to our Advance Care Plan information website.

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Contact the Dementia Learning and development team

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Contact the Dementia Learning and development team

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https://forms.office.com/e/ckVYEJtiyN

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Resources and information around the support for older people living in Wales

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Home - Older People's Commissioner for Wales

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The Commissioner is working for a Wales where older people are valued, rights are upheld and no-one is left behind.

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Dementia Learning and Development Team booking form

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Dementia Learning and Development Team booking form

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https://padlet.com/mattgwynlloyd/AssistiveTechnologyProducts

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Overview

This free online four-week course will give you a unique insight into dementia through the stories, symptoms and science behind four of the less commonly diagnosed forms of dementia.

Dementia is one of the top priorities in global health and is estimated to affect over 44 million people worldwide. This has a huge impact on individuals and on society, so improvements in understanding, care and treatments are desperately needed.

In this free online course you'll discover some of the key issues in dementia care and research through the eyes of people affected by the condition, and world-leading experts at UCL.

We'll show how research into the signs, stages, symptoms and causes of less common forms can bring us closer to the aim of defeating dementia.

Dementia is an umbrella term for a number of diseases, all causing a progressive loss of our ability to think, feel and perceive by affecting how the brain functions. In the four weeks of this course we'll investigate four of the less common forms of dementia that are important to understand better in their own right (they're often not well recognised), but can also provide important insights that change how we think about dementia in general.

Watch the course trailer on YouTube

Widget Placeholder https://www.youtube.com/watch?v=YhWh_qPQzyY

Who this course is for

The course is aimed at:

anyone who works with people diagnosed with dementia

people who have a friend or family member with dementia

people in the early stages of the disease

students who want to learn more about dementia

The only requirement is an interest in dementia and its effects on people and the brain.

Course content

Week 1: What if dementia runs in the family?

Explore the challenges that face families - and ground-breaking research taking place - with people affected by familial Alzheimer's disease, where the condition runs in the family and often starts at a young age.

Week 2: What if dementia affects behaviour and personality?

Dementia is not just about memory loss - we investigate the particular challenges for diagnosis and care for people with behavioural variant frontotemporal dementia.

Week 3: What if dementia makes you see things that aren't there?

Some people with dementia experience hallucinations, and many describe fluctuations in their symptoms over time. These aspects are particularly clear in dementia with Lewy bodies, which you'll learn about in week 3.

Week 4: What if dementia affects your vision, not your memory?

People with posterior cortical atrophy experience changes in the way the brain processes visual information. We'll explore this condition and the research taking place to help people live better with visual impairment related to dementia.

How you'll learn

This course is presented by experts from the UCL Queen Square Institute of Neurology and Division of Psychiatry who are highly regarded for their work as scientists and clinicians. You'll also hear from people who have been diagnosed with dementia, and people who care for a family member with dementia, to get a better understanding of the impact that a diagnosis of dementia brings.

You'll gain an understanding of how dementia affects people by:

watching video interviews

looking deeper into the topics by reading articles

interacting through activities and questions

learning from others on the course by taking part in the discussions that accompany each step

Course information last modified: 1 Nov 2021, 15:03

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This free online four-week course will give you a unique insight into dementia through the stories, symptoms and science behind four of the less commonly diagnosed forms of dementia. Dementia is one of the top priorities in global health and is estimated to affect over 44 million people worldwide.

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We regret that we cannot currently send out hard copy resources by post but we aim to resume doing so as early in 2022 as possible. In the meantime, we have provided links where our resources are available to download.

Visit our Human Right Act Hub to find out more about our Human Rights Act, how it works and how it is a useful tool for people working in public services.

The Human Rights Act contains 16 rights. The rights in the Human Rights Act come from the European Convention on Human Rights. The Human Rights Act integrated these "convention rights" into our law here in the UK.

You can find out more about why these 16 rights are important for people working in public services here:

This tool was created by the British Institute of Human Rights alongside staff and leadership at TEWV NHS Foundation Trust. This was part of a 15-month, Health Foundation funded project called; "A Human Rights Based Approach to Mental Health Recovery".

This tool was created together with staff working in mental health and capacity services within Tees, Esk and Wear Valleys NHS Foundation Trust (TEWV). It is therefore aimed at staff working within these settings. This resource will also be helpful for leadership in supporting staff to operationalise a human rights-based approach. Lots of information here may also be useful for people using services, their families, carers, or advocates.

The project aimed to support TEWV NHS Trust to embed a human rights approach within their model of Mental Health Recovery. The project included:

Working with people accessing TEWV mental health services to support them and their families/loved ones to know and claim their rights. Through this part of the project we co-produced a tool with people accessing services, their families/loved ones, carers and advocates. It can be found on our page, Resources for Individuals.

Building the capacity of TEWV mental health staff to respect, protect and fulfil their legal duties under the Human Rights Act. This booklet was created together with staff as a tool to support them to operationalise human rights every day.

Supporting leadership with the knowledge and understanding of human rights law to create a human rights respecting environment for their staff and people accessing services.

Download the booklet here.

Hear our Policy & Programmes Manager, Carlyn, talk about the resources and the project here:

This booklet is about human rights in services supporting people with mental health and/or mental capacity issues. It is aimed at practitioners working in those settings. We use the term 'practitioners' throughout to include anyone working in these settings (e.g. qualified and unqualified workers). Lots of information in this booklet may also be useful for people using services, their family, carers or advocates.

You can download the booklet here or order hard copies here.

This booklet is about human rights in learning disability settings. It is aimed at professional's working in the community but is relevant for those working in disability services of all kinds. We use the term 'practitioner' throughout to include anyone working in learning disability settings (e.g. qualified and unqualified workers). Lots of information in the booklet may also be useful for learning disabled people using services, their family, carers or advocates.

You can download the guide here or order hard copies here.

This booklet is about human rights in mental health early intervention services. It is aimed at professionals working in those settings, in hospital or in the community. We use the term 'practitioner' throughout to include anyone working in early intervention (e.g. qualified and unqualified workers). Lots of information in the booklet may also be useful for people using mental health early intervention services, their family, carers or advocates.

You can download the guide here or order hard copies here.

This booklet is about human rights and discharging people from mental health hospitals. It is aimed at any practitioners supporting people before, during or after hospital discharge. Lots of information in the booklet may also be useful for people using services, their family, carers or advocates.

You can download the guide here or order hard copies here.

This booklet is about human rights in mental health rehabilitation settings. It is aimed at professionals working in those settings. We use the term 'practitioner' throughout to include anyone working in mental health rehabilitation (e.g. qualified and unqualified workers). Lots of information in the booklet may also be useful for people using rehabilitation services, their family, carers and advocates.

You can download the booklet here or order hard copies here.

This booklet is about human rights in mental health settings for children and young people. It is aimed at professionals working in hospitals but some of the information may be useful for work in the community. We use the term 'practitioner' throughout to include anyone working in these settings (e.g. qualified and unqualified workers). We use the term 'young people' throughout to mean any person using mental health care under the age of 18. Lots of information in the booklet may also be useful for people using services, their family, carers or advocates.

You can download the guide here or order hard copies here.

This booklet is about human rights in accommodation based support settings for people with mental health issues. It is aimed at support workers, mental health practitioners and anybody else working in residential settings where mental capacity or mental health is a factor. We use the term 'practitioner' throughout to include anyone working in these settings (e.g. qualified and unqualified workers). Lots of information in the booklet may also be useful for people using services, their family, carers or advocates.

You can download the guide here or order hard copies online.

The above 7 guides can also be ordered as a suite of 7 toolkits, designed to support practitioners working across mental health and mental capacity. Hard copies of the toolkit can be ordered here.

This booklet is about human rights in social care settings. It is aimed at social care practitioners working in settings where mental capacity or mental health is a factor. We use the term 'practitioner' throughout to include anyone working in these settings (e.g. qualified and unqualified workers). Lots of information in the booklet may also be useful for people using services, their family, carers or advocates.

You can download the guide here or order hard copies online.

This booklet is about human rights and dementia care. It is aimed at professionals working in dementia care settings, in hospital or in the community (we've used the term 'practitioner' throughout to capture this). Lots of information in the booklet may also be useful for people using dementia care services, their family or carers.

You can download the guide here or order hard copies online.

This Guide has been developed support nurses to deliver health services that respect human rights by providing accessible information about human rights and how they are relevant in health and social care.

You can download the guide here or order hard copies online.

This Guide has been developed to support midwives to deliver maternity services that respect human rights by providing accessible information about human rights and how they are relevant in a maternity context.

You can download the guide here or order hard copies online.

This Guide has been developed to support those working in end of life care deliver care services that respect human rights by providing accessible information about human rights and how they are relevant in an end of life care context.

You can download the guide here or order hard copies online.

Posters

Work in mental capacity or mental health services? Want a handy reminder of what human rights you need to consider when making decisions? Our poster series is for you!

Our series of 8 posters aim to help practitioners remember what human rights to consider when making decisions across key practice areas. You can download the posters by clicking on the links below:

You can also order hard copies of the posters here.

Toolkit for reflection on human rights in the context of social care

We are delighted to have been involved in the co-production of a new toolkit for reflection on human rights in the context of social care. This toolkit was created with Dr Caroline Green at the Health & Social Care Workforce Research Unit and MyHomeLife Scotland.

The Covid-19 pandemic has shone a spotlight on the importance of human rights for people needing care and support in care homes or at home, their carers, families and friends. Care home residents were one of the groups most severely affected by the virus, with thousands of deaths from a Covid-19 infection not only in England but many countries around the world. The need to protect people requiring care and support and to balance infection control with the right to a private and family life and to social participation was but one of many examples of a human rights issue that we as a society had to face during this pandemic. Conversations around these topics are often difficult.

This interactive toolkit will support you to start these conversations by commencing your own reflective journey on human rights and it includes:

1. The Personality Test - discover what kind of 'human rights in care homes' personality type you are

2. The 'Who am I' creative page - an opportunity reflect and think about what human rights mean to you with writing, drawing and colouring in

3. The Human Rights Story Dice Game - roll the dice to start of your human rights story telling. Using cards and dice with prompts, you can explore human rights in your work or private life together with colleagues, service users or even by yourself. You can print this tool and cut out the cards and dice. This game is also available as a physical pocket version.

Find out more about the toolkit here.

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Resources for Staff Working in Public Services

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We regret that we cannot currently send out hard copy resources by post but we aim to resume doing so as early in 2022 as possible. In the meantime, we have provided links where our resources are available to download.

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This section includes up to date information on managing delirium in patients who are receiving palliative care or are within the hospice setting.

This section contains links to resource hubs with information for practitioners managing delirium in the critical care setting.

This section contains information on methods to prevent, screen and treat delirium in hospitalised non-ICU patients.

This section gives specific advice for those working with patients experiencing delirium in care home settings or older people living in the community.

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Delirium Hub: Delirium in specific settings and situations | British Geriatrics Society

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This section includes up to date information on managing delirium in patients who are receiving palliative care or are within the hospice setting. This section contains links to resource hubs with information for practitioners managing delirium in the critical care setting. This section contains information on methods to prevent, screen and treat delirium in hospitalised non-ICU patients.

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Older people living in residential facilities have many vital needs which care providers work hard to be able to meet. One area which is sometimes overlooked is the need for older people to continue to have fun. Our 'fun-guarding' initiative highlights some issues, ideas and examples in ensuring older people's need for enjoyment is protected and prioritised in care settings.

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Fun-guarding | British Geriatrics Society

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Older people living in residential facilities have many vital needs which care providers work hard to be able to meet. One area which is sometimes overlooked is the need for older people to continue to have fun. Our 'fun-guarding' initiative highlights some issues, ideas and examples in ensuring older people's need for enjoyment is protected and prioritised in care settings.

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Listen and reflect on people's experiences 

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Listen and reflect on people's experiences 

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dementia
FRIENDLY VALE

If you are touched by dementia or would just like to know more, then this website is for you.

Our MISSION

Dementia Friendly Vale is a network of individuals, groups and organisations raising awareness and increasing the support of people living with dementia and their carers in and through their local communities across the Vale of Glamorgan.

This work includes running groups, activities and events in partnership with local organisations, making information available about local and national support for dementia and working with local businesses so people affected by dementia can be confident their needs will be understood and supported when they visit.

Communities are becoming Dementia Friendly as a result, enabling people affected by dementia to maintain their independence, interests and skills by remaining connected to their local community without fear or stigma at the time it's needed most. Further information about Dementia Friendly Communities can be found on the Alzheimer's website.

the dementia
CHALLENGE

Dementia is probably the biggest health and social care crisis facing our society today. Someone develops the condition every three minutes and too many people are having to face this alone.

More than 850,000 people in the UK are believed to be living with Dementia, including over 6000 in Cardiff & The Vale.

Local activities

Many communities in the Vale have activities for those with dementia and their carers. Find out what is available near you by clicking on the button below.

find support

Do you need help or support or maybe just some information? Follow this link for a wealth of material.

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dementia FRIENDLY VALE If you are touched by dementia or would just like to know more, then this website is for you. Our MISSION Dementia Friendly Vale is a network of individuals, groups and organisations raising awareness and increasing the support of people living with dementia and their carers in and through their local communities across the Vale of Glamorgan.

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John's Campaign - a guide to implementation 

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John's Campaign - a guide to implementation 

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As leaders and managers in social care, you are working hard to protect the well-being of your teams who are going above and beyond to ensure services continue for those who need them. Well-being remains a priority and additional support maybe needed.

Your teams – protecting well-being and reducing the risk of burnout

Managers can access a practical guide on maintaining team resilience from Skills for Care. The guide includes examples of things that you can do to reduce the risk of workplace stress, help workers develop resilient behaviours and make resilient behaviour the norm in the workplace.

Here is a five-minute check in you can do with your team to help support them to consider their need to self-care:

Have I eaten regular meals this week?

Have I showered?

Am I getting enough sleep? Do I wake in the night and struggle to go back to sleep?

Am I being self-critical or am I thinking kind thoughts about myself?

Have I made time to go for a walk or to be outside?

Have I spent time with someone who is important to me, even if that’s a phone call or video call?

Have I moved my body today?

Has something made me smile this week?

The Tavistock and Portman NHS Foundation Trust managers resource describes some of the physical and emotional responses you may see from your team. It explores ways you can support your team and their well-being.

Compassionate leadership – what is it and why is it important to leading in a crisis?

You can find resources, including webinars and blogs explaining what compassionate leadership is on the Kings Fund website and why it is so important as a leadership approach during a time of crisis. You can also find other resources and webinars to enable a compassionate approach to leadership.

More resources on compassionate leadership are available from the Health Education and Improvement Wales website, Gwella. These include a compassionate behaviour compass to help us navigate how we interact and engage with colleagues.

Leading teams providing end of life care

Some care providers in Wales are providing end of life care and this is hugely emotionally challenging. Here you can find advice and resources on how to support your team through their grief and model compassionate leadership.

Supporting staff who are experiencing poor mental health

Mind provide free templates to help managers and their staff to develop Well-being Action Plans as a way to proactively support positive mental health and prevent work related stress and burn out.

The Intensive Care Society has made available a series of downloadable posters aimed at improving our understanding of psychological well-being at work, the impact that reduced well-being can have and what we can do in response. You can use the posters to set up a staff wellbeing board or complement other well-being activities in your workplace.

Concern is rising about the long term impact of the pandemic on the mental health of care workers and the increasing risk of social care workers developing symptoms of post-traumatic stress disorder (PTSD) and depression. Managers have a vital role to play in recognising the signs of PTSD among their staff and teams and being able to direct them to appropriate support. A helpful resource is available from the All Wales Traumatic Stress Service Initiative - the resource is written for anyone supporting people who experience traumatic events and is full of practical information and toolkits managers can use to support their staff.

Hints and tips for managing teams during COVID-19

Healthier Scotland have developed a well-being hub for health and social care workers. There are resources for managers and leaders offering support on modelling self-care, supporting effective team working and supporting individual team members.

The Local Government Association has produced an Employer's Guide to help managers support the well-being of their staff.

It’s useful to consider practical tips on how you manage your teams to adapt to changing circumstances.

To promote workplace well-being, you might want to consider creating a ‘Pause Pod’, if your setting allows. A Pause Pod is a dedicated space for staff teams to take a moment of calm, rest or quiet reflection. It can be used before, during or after the working day and this can be defined by your operational needs. It is a quiet, calming space where you may like to access some self-care resources, refreshments or just a space to sit quietly. You might use the room to host a positive messages board where you and your team can leave messages of thanks, admiration and positivity.

It can be difficult to remain motivated during a prolonged period of stress and pressure. This article from the Kings Fund explains why our motivation can be affected and gives practical suggestions to help support managers and leaders maintain their energy.

Approaching a well-being conversation

Managers have the unique opportunity to create a culture that supports and promotes employee well-being at the workplace. Holding well-being conversations with empathy makes your team members feel more valued and supported. The All Wales Workforce Well-being Conversation Guide is designed to shape evidence-based well-being conversations at work. The guide aims to help managers better understand the well-being needs of their staff as well as offering them a means of having that important conversation about their well-being.

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Wellbeing Tools for Care Workers in Coronavirus | Social Care Wales

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We’ve gathered information, advice and links to resources that can help support the health and well-being of social care workers in the wake of the Covid-19 pandemic.

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Access our wide range of publications designed to support and inform anyone affected by dementia.

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A quick guide for care home managers

Think delirium!

Delirium is a sudden change in a person's mental state. It is a serious condition that is sometimes mistaken for dementia or, more rarely, depression.

Unlike dementia, delirium develops quickly and is usually temporary.

Having delirium can mean:

longer hospital stays

increased risk of dementia

increased mortality.

Treatment will depend on the underlying cause and should be managed by a healthcare professional, such as a GP.

Delirium is preventable in 30% of cases.

Risk factors for delirium

Hyperactive delirium

Makes a person restless, agitated, aggressive.

Symptoms include:

Increased confusion

Hallucinations or delusions

Sleep disturbance

Being less co-operative.

Mixed delirium occurs when the person moves between the two types.

Hypoactive delirium

Makes a person withdrawn, quiet, sleepy.

Symptoms include:

Poor concentration

Being less aware

Reduced mobility or movement

Reduced appetite.

The severity of symptoms can vary during the course of a day.
If any of these changes occur, an assessment from a health or social care practitioner should be requested. If the assessment indicates delirium, a healthcare professional with the relevant expertise should make the final diagnosis.
Request a review if they are taking multiple medications.

Cognitive impairment or disorientation

Make sure the person can see a clock and a calendar.

Talk to the person to help orientate them.

Make sure any hearing aids and glasses are being worn
and work well.

Poor food intake

Make sure any dentures are clean, being worn and fit well.

Look at the advice in our 'Nutrition support in adults' guideline (NICE guideline 32).

Disturbed sleep

Avoid disturbing the person during sleep periods.

Sharing information

Being well-informed may help reduce any distress for the person and their family.

Care staff should provide information that shows:

where to find support

the importance of telling care staff about any sudden changes

delirium is a common condition that is usually temporary

how other people with delirium have felt.

The public delirium information leaflet from the Royal College of Psychiatrists may be helpful.

Experiences of people with delirium

Worrying that people are trying to harm you.

Feeling afraid, irritable, anxious, depressed.

Having vivid dreams that continue when awake.

Difficulty following what is being said.

Difficulty speaking clearly.

Seeing and hearing things that are not there.

Adapted from Dementia UK.
This content has been co-produced by NICE and the Social Care Institute for Excellence (SCIE). It is based on NICE's guideline on recognising and preventing delirium.

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NICE's quick guide on recognising and preventing delirium

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Not everyone has access to the internet so we have produced a Guide to the Living with Dementia Toolkit that can be downloaded and printed off. We encourage peers, family members, and health and social care professionals to make use of this.

The Guide is available in English and in Welsh. It introduces the toolkit and the resources available. For the full experience of the toolkit, you need to look at the website. QR codes link you back to the website at various points. There is a 'How to use QR codes' video lower down the page.

We have some boxes of Guides for groups or services to distribute. Please contact us at IDEAL@exeter.ac.uk if you need these.

Click on the video below to watch about how to use QR codes.

Downloadable PDFs of individual resources

The Living with Dementia Toolkit is about choice and picking what interests you. The Guide gives you an overview to the range of resources in the Toolkit, to help you decide which resources to look at.

When you look at an individual resource you may want to download a version that you can print off. Scroll down to the end of the page to find the PDF, and click to open it so you can print it.

We are adding these as fast as we can. They will be available soon.

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Our brains have about 90 billion nerve cells. They are specialised in sending messages to each other. They allow us to sense and respond to the world around us.

During dementia, cells lose the ability to communicate with each other and eventually die. This loss of nerve cells causes the symptoms of dementia, for example memory loss, as the brain becomes unable to function in its usual way. What causes nerve cells to die in dementia is a hot topic for our research. Our scientists are finding out more every day about how we can protect brain cells from harm, moving us closer to new dementia treatments. Nerve cells have a body or hub and many long, thin branches (axons and dendrites) that extend from the body. These reach out to other nerve cells. The points where nerve cells connect to each other are called synapses. Nerve cells use both tiny electrical impulses and specialised chemicals to send messages to each other.

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Dementia Brain Tour | Alzheimer's Research UK

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Dementia affects different areas of the brain. The Brain Tour shows what the different parts of the brain do, and how they can be affected by dementia.

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Carers Trust Wales and the Royal College of Nursing have explored an adaptation of the Triangle of Care to meet the needs of carers of people with dementia in acute hospitals in Wales.

Key points

This guide supports acute hospitals to ensure carers of people with dementia are identified and supported. The original Triangle of Care guide was launched in July 2010 as a joint piece of work between The Princess Royal Trust for Carers (now Carers Trust) and the National Mental Health Development Unit.

It emphasises the need for better local strategic involvement of carers and families in the care planning and treatment of people with mental ill-health.

About the resource

Carers Trust Wales has been extremely keen to build on the success of the Triangle of Care model in England and Scotland by advocating and supporting the implementation of the Triangle of Care standards for carers accessing services in local health boards across Wales.

Funded through the RCN Foundation, the development of a Triangle of Care for dementia Wales edition has been a collaborative effort between the Royal College of Nursing and Carers Trust Wales. It has been developed from the original Triangle of Care for dementia, which was co-designed with carers, people with dementia and practitioners, with the support of Uniting Carers and Dementia UK.

We hope the Welsh edition for best practice in dementia care can lead to consistent carer involvement and support across all health and social care services irrespective of where and when a person is being treated. The partnership between Carers Trust and the Royal College of Nursing has been incredibly positive and we hope that this can be replicated across health services with nurses and carers working as partners.

See also:

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The Triangle of Care Carers Included: A Guide to Best Practice for Dementia Care in Wales

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Carers Trust Wales and the Royal College of Nursing have explored an adaptation of the Triangle of Care to meet the needs of carers of people with dementia in acute hospitals in Wales. This guide supports acute hospitals to ensure carers of people with dementia are identified and supported.

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Our resources page is full of free materials to help you at each stage of your playlist journey, whether you're making a personal playlist for yourself or helping someone to make theirs.

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As I Walk the Last Mile of the Way Report

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Social Care Institute for Excellence (SCIE)

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Free!

This e-learning course aims to raise the awareness and skills of care staff who work with people with dementia. It aligns with Tier 1 of the National Dementia Training Standards Framework, which is a requirement for all staff working in social care. It will also allow you to collect evidence towards the relevant section of the Care Certificate.

The course seeks to improve the wellbeing and experience of people with dementia and of the care staff working with them. It should improve your confidence in managing situations you find challenging.

Course content

What is dementia?

Living well with dementia

Talking to people who are living with dementia

Explain what is meant by the term 'dementia'

Discuss the signs and symptoms of dementia

Differentiate dementia from other similar conditions

Explain why early diagnosis is important

Discuss what people can do to reduce their risk of developing dementia

Explain what is involved in 'living well'

Discuss the importance of recognising what's important to people

Discuss how dementia affects the person, their family and our wider society

Understand how to communicate effectively and compassionately with individuals who have dementia

Understand why a person with dementia might show signs of distress

Begin to respond effectively to people with dementia who have different communication needs

Who is this course for? Open

All non-regulated frontline staff working in health and social care including:

activities workers

assistant practitioners

care assistants

carers

day care assistants

domiciliary care workers

healthcare support workers

homecare workers

maternity support workers

nursing assistants

personal assistants

reablement assistants

residential care workers

senior homecare workers

support workers

volunteers

and other health or care assistant-related roles

How can the course promote Care Act (2014) and Care Quality Commission (CQC) compliance? Open

The CQC require organisations to deliver care in a way that is safe, effective, caring and responsive. Organisations must also meet Care Act (2014) requirements and be well-led.

Caring for people in a way that is 'person-centred' (that meets the needs and wishes of people and their families) is at the heart of CQC and other legal requirements - because of this it is also the central focus of this course. Finding out what people need and want, being kind and treating people with dignity and respect, are all important aspects of the person-centred approach.

How can the course help my organisation follow other government guidelines? Open

The Department of Health's best practice guidance Quality Outcomes for People with Dementia: Building on the Work of the National Dementia Strategy (2010) lists four areas of priority in dementia care:

Good quality early diagnosis

Improved quality of care in general hospitals

Living well with dementia in care homes

Reduced use of antipsychotic medication

This course helps organisations improve in these priority areas by promoting understanding and better care of people with dementia. Better care can be delivered by improving the ability of staff to understand people who are living with dementia, and by improving their ability to respond to behaviour that challenges. Better responses from staff have been shown to reduce distress and reduce the need for antipsychotic medication.

Can I use it to promote my own professional development? Open

SCORM compliant (on your LMS) version Open

If you are interested in hosting this e-learning course on your Learning Management System (LMS) or Virtual Learning Environment (VLE) we are able to help.

We can provide:

Course content: A SCORM 1.2 or 2004 compliant version of the course.

Course updates: We will supply you with course updates for an agreed period of time.

Custom changes: We can help by making custom changes to the course to meet your specific learning and development needs.

Contact us to find out more about bringing our course to your learners on your platform.

How long does it take to study the course?Open

This is always a difficult question to answer as no two people are the same. There are a number of factors to consider such as level of knowledge, reading speed and in which order the course is completed.

For that reason, our estimates are really quite broad. Analytics shows that learners take an average of 30 minutes to study the course.

Version history Open

v1.0 (May 2019): Original release of Dementia awareness course.

Previously: SCIE published a Dementia e-learning course, released in 2009. This new, 2019 released, Dementia awareness course replaces our 2009 Dementia course.

Another Dementia course Open

Previously SCIE published a Dementia e-learning course, released in 2009. This new, 2019 released, Dementia awareness course replaces our 2009 Dementia course.

The 2009 version of our course will remain available until end of June 2019 encase you have previously started your study and wish to complete that version of the course.

Going forward, we are working on a course aligned to Tier 2 of the National Dementia Training Standards Framework, probable release date 2020.

Terms and conditionsOpen

An internet connection is required, with the ability to stream video content from Vimeo and YouTube.

All material in these resources, including text, graphics, photographs, video and audio is copyright of the Social Care Institute for Excellence (SCIE), unless otherwise stated.

Use of this course is freely permitted, but commercial use is not authorised unless permission is first obtained in writing.

Recommended devices / web browsersOpen

SCIE recommends using the latest versions of device operating software and browsers to access our e-learning courses.

The minimum technical requirements are (depending on your setup):

Chrome: Latest version

Firefox: Latest version

Microsoft Edge: Latest version

Safari: Latest version

iOS: 10

Android: Marshmallow (6.0)

This course has been tested on a selection of Apple and Android mobile and tablet devices, running the latest web browsers.

SCIE cannot take responsibility if the course does not work on your particular device or software.

Please note: Usage of Microsoft Internet Explorer, including IE 11, is not recommended.

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Free! This e-learning course aims to raise the awareness and skills of care staff who work with people with dementia. It aligns with Tier 1 of the National Dementia Training Standards Framework, which is a requirement for all staff working in social care.

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Cognitive Stimulation Therapy | Simondementia

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Simon's Dementia CST Activities Blog offers a free and open access cognitive stimulation therapy activities resource, with a library of off the shelf themed pages. Take a look at www.simondementia.co.uk

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Assisting with person care - Ideas and tips for carers 

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Assisting with person care - Ideas and tips for carers 

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The Objects of Comfort social media campaign has invited people to respond to items from the Museum's online collection and to share their own objects - the things that bring solace, that evoke memories, or help improve their mood or wellbeing during times of stress and hardship.

With the help of partners we are launching a new museum resource for care and group settings.

Our Objects of Comfort aim for the future is to give every care home in Wales the skills and materials to deliver activities based around Amgueddfa Cymru's collections. If you would like to get involved and be part of this exciting project, please get in touch!

See some of the activities below, on the following themes:
Holidays
The Robin
Tea
Teddy
Seashore
Music
Also, some 'Talking Points' that might help you to get a conversation started.
New themes to be added every few weeks.
Contact Us
Are there any themes or objects you'd like to see featured?
Would you like to let us know what you think?

Email Sharon.ford@museumwales.ac.uk

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The Objects of Comfort social media campaign has invited people to respond to items from the Museum's online collection and to share their own objects - the things that bring solace, that evoke memories, or help improve their mood or wellbeing during times of stress and hardship.

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Welcome

The Virtual Carers Centre is for you if you support or care for someone with dementia. There are plenty of resources to explore, so let's get started.

Playing

The Virtual Carers Centre is built for family carers like you who support or care for someone with dementia. We want to make this centre as useful and helpful as we can for you, so please let us know if you have any feedback.

Paused

The Virtual Carers Centre is built for family carers like you who support or care for someone with dementia. We want to make this centre as useful and helpful as we can for you, so please let us know if you have any feedback.

Welcome

The Virtual Carers Centre is built for family carers like you who support or care for someone with dementia. We want to make this centre as useful and helpful as we can for you, so please let us know if you have any feedback.

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The Virtual Carers Centre is for you if you support or care for someone with dementia. There are plenty of resources to explore, so let's get started. The Virtual Carers Centre is built for family carers like you who support or care for someone with dementia.

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This form is designed to help you think about breaking activities into manageable steps and think about how to adapt

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Background Vision and purpose Values and behaviours Strategic objectives Communications and engagement Key facts Key documents HEIW board (Executive) HEIW board (Independent) Senior leadership team Chief Executive updates Board meetings, agendas and standing orders Information governance

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A series of webinars that explore topics with people living with dementia 

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A series of webinars that explore topics with people living with dementia 

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Dementia Events & Alzheimer's Events Listings, Conferences & More

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View with the latest dementia events and Alzheimer's events & conferences around the country here.

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The following two minute resources have been developed by Cardiff and Vale University Health Board. They are relevant to all NHS Wales, however, to access employee and wellbeing services please refer to your own local organisation.

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The following two minute resources have been developed by Cardiff and Vale University Health Board. They are relevant to all NHS Wales, however, to access employee and wellbeing services please refer to your own local organisation.

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This video is a lunch and learn session produced by the Dementia Learning and Development Team and Helen Lambert an independent dementia trainer. This particular session focusses on the experience of carers and embraces the statement that Carer's Count!

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C&V Dementia Learning and Development Team

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Developed by the University of Exeter in collaboration with the Alzheimer's Society and Innovations in Dementia this document is a step by step guide to setting and achieving goals whilst experiencing a dementia

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Lunch and Learn 4: Delirium or something else?

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Lunch and Learn 4: Delirium or something else?

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This video is a lunch and learn session produced by the Dementia Learning and Development Team. This particular session focusses on what might cause a change the presentation of a Person Living with Dementia. Could it be delirium or something else?

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C&V Dementia Learning and Development Team

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Lunch and Learn 4: Delirium or something else?

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Information webinars on a variety of topics

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Dementia Events & Alzheimer's Events Listings, Conferences & More

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View with the latest dementia events and Alzheimer's events & conferences around the country here.

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This video is a lunch and learn session produced by the Dementia Learning and Development Team alongside Helen Lambert an independent dementia trainer. This particular session focusses on enabling people living with dementia to live meaningful lives through the use of positive risk taking.

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C&V Dementia Learning and Development Team

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Lunch and Learn Session 3: It's the little things!

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This video is a lunch and learn session produced by the Dementia Learning and Development Team alongside Helen Lambert an independent dementia trainer. This particular session focusses on how to have better conversations and the language used about and with People Living with Dementia.

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C&V Dementia Learning and Development Team

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Lunch and Learn Session 2: Better Conversations

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Alzheimer's Society. This is me. 'This is me' is a simple leaflet for anyone receiving professional care who is living with dementia or experiencing delirium or other communication difficulties. The leaflet can be used in any setting - at home, in hospital, in respite care or in a care home.

College of Optometrists. PrOVIDe: Prevalence of Visual Impairment in Dementia. Correcting the vision of a person with dementia can improve their quality of life. This NIHR-funded research explores the prevalence of a range of vision problems in people with dementia aged 60-89 years, and explores to what extent are these conditions undetected or inappropriately managed.

Dementia Evidence Toolkit. The Dementia Evidence Toolkit is for commissioners, care providers, people working in health and social care and people with dementia and their families.

Dementia UK. Dementia UK provides specialist dementia support for families through our Admiral Nurse service.

Department of Health and Social Care. Making a difference in dementia, nursing vision and strategy: refreshed edition. This refreshed strategy reinforces the fundamental role nurses play in providing care and support to people, so they can live well with dementia.

Health Education England. Dementia. Dementia awareness resources include: an online course e-Dementia: Introduction to Dementia and the Dementia Core Skills Education and Training Framework.

Join Dementia Research. This service allows people to register their interest in participating in dementia research and be matched to suitable studies.

National Audit of Dementia. Round 4 Audit Report (2019). There are 850,000 people living with dementia in the UK. This is expected to rise to one million by 2025 and continue to increase to two million by 2051. This report presents the Round 4 results of the National Audit of Dementia.

National Dementia Action Alliance. A national alliance for dementia care and research organisations across England connecting, sharing best practice and taking action on dementia.

NHS England. My future wishes: Advance Care Planning (ACP) for people with dementia in all care settings. This document will help you to develop an Advance Care Plan for people living with dementia.

NICE & SCIE. Dementia - discussing and planning support after diagnosis. NICE and SCIE have developed a new quick guide with the aim of informing people and their family and carers about the support that is available after a diagnosis of dementia.

Scottish Government. Your health, your rights. Charter of Patient Rights and Responsibilities.

Young Dementia UK. YoungDementia UK is the dedicated national charity for younger people with dementia and their families.

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Professional resources | Dementia | Royal College of Nursing

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Alzheimer's Society. This is me. 'This is me' is a simple leaflet for anyone receiving professional care who is living with dementia or experiencing delirium or other communication difficulties. The leaflet can be used in any setting - at home, in hospital, in respite care or in a care home.

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Our mission is to create Carer Friendly communities: where unpaid carers are recognised, supported and given the information that matters to them.We are part of Carers Trust South East Wales.

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Advert

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Video made with Biteable. The World's Simplest Video Maker

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Dementia 101

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Developed by Cardiff university

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A powerful new animation produced by Cardiff University and narrated by Sir Tony Robinson has laid bare the communication difficulties facing people with dementia, in a bid to help carers better understand and support people with the condition.

Based on a decade of research by Professor Alison Wray of the University's School of English, Communication and Philosophy, the animation will help families and professional carers understand why communicating with a person with dementia can be so challenging.

One of the University's Honorary Fellows, Sir Tony Robinson - who is also an ambassador for Alzheimer's Society and has experience of family dementia - narrates the animation, telling the story of the disorientation and confusion associated with memory loss.

Misunderstandings and frustrations

The animation not only shows how people with dementia have difficulty finding words and struggle to make sense of the world, but also how they develop coping mechanisms, and the onward impact these can have on the messages they express.

It also looks at how their messages are likely to be received and responded to by others, helping carers realise that neither they, nor the person with dementia, are to blame for the many misunderstandings and frustrations that can arise.

Professor Wray said: "Caring for a person with dementia can be very challenging and stressful, and carers, both family and professional, need ideas to help them make sense of what is happening. This animation examines the complexities of interacting with a person with dementia. It looks at the social consequences of the cognitive challenges arising from dementia, but importantly, it also shows how resilient our basic social interactional behaviour is in the face of the condition..."

"The animation and the research underpinning it are about improving the quality of care for those with dementia. If carers can gain confidence to experiment with their communicative style and become interpreters for the person with dementia, then they can help the world make sense for those individuals. There is so much that people with dementia can achieve if they are supported appropriately in their communication."

Professor Alison Wray Research Professor

A more fruitful and less stressful life

The tips for carers featured in the animation include being patient, changing their tone of voice and looking for the reasons behind the words or behaviours of a person with dementia. The animation also shows how carers can empathise with reactions and help people with dementia find the missing information.

Sir Tony Robinson said: "Learning to empathise with someone who has dementia can be hard. But there's always a reason behind a sufferer's apparently nonsensical behaviour and agitated demands. The more we learn to understand them and help meet their needs, the more rewarding our relationship with them can become..."

"The more we learn to understand them and help meet their needs, the more rewarding our relationship with them can become. Cardiff University's excellent animations offer vital tips and insights to help us offer them a more fruitful and less stressful life."

Sir Tony Robinson

The animation is available here and is free to all. It has also been distributed to collaborating care and care-training providers including Wesley Mission Queensland, Six Degrees Salford and Sunrise Senior Living.

Phil McEvoy, Managing Director of Six Degrees Social Enterprise, said: "We have been using the film in our emPoWereD Conversations courses for family carers of people living with dementia. The film is very accessible. The strategies are explained very clearly and they are straightforward to use..."

"The film is really helping family carers to stay connected to their loved ones."

Phil McEvoy Managing Director of Six Degrees Social Enterprise

The animation, based on Professor Wray's research project - The Dynamics of Dementia Communication - was drawn by David Hallangen, and funded by an Impact grant from the Economic and Social Research Council. A second film, also featuring Sir Tony, will be released in the autumn.

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Helping dementia carers make sense of their experiences

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A powerful new animation produced by Cardiff University and narrated by Sir Tony Robinson has laid bare the communication difficulties facing people with dementia, in a bid to help carers better understand and support people with the condition.

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Carer's UK Listening and Support Service

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Carer's UK Listening and Support Service

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This service is to provide emotional support for unpaid carers and is available bilingually.

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Welcome to the Listening Support Service

Caring can be very rewarding, but it can also feel isolating or challenging at times. The Listening Support Service offers a series of phone calls with someone who understands the ups and downs of caring and who can provide a listening ear. Whether you want to discuss some of the issues you are facing as a carer, or just want to chat, our friendly, trained callers are here to listen. How you use the calls is up to you.

We recommend you read our Service Agreement to find out more about what to expect from the Listening Support Service and see our FAQs for additional information.

"Just to have someone to talk to has been so helpful." Anonymous service user

What you can expect

Our callers will phone you once a week/fortnight, up to four times, for a chance to chat. Calls take place around the same day and time each week/fortnight, and last around 30 minutes. The callers (who are all trained volunteers) can provide emotional support and are able to suggest services to contact for more support, but they cannot give advice or counselling.

"I've really looked forward to the calls."Anonymous service user

How do I sign up?

To sign up to receive these calls, we will need you to complete a short form to tell us a bit about you.

Before completing this, please make sure you have read and can answer 'yes' to the following:

I am/the person I am referring is an unpaid carer.*

I am/the person I am referring is 18 or over.

If I am referring on behalf of someone else, I have their permission to do so.

I understand that the Listening Support Service cannot provide counselling/advice/information or support for mental health/crisis situations.

I am available to take the calls at the same day/time frame each week/fortnight over four/eight weeks.

*The Listening Support Service is open to unpaid carers. This includes anyone who receives Carer's Allowance or a direct payment from a local council. It doesn't include anyone who is caring as part of paid employment.

The Listening Support Service is also available in Welsh. You can select to complete the self-referral form in Welsh and for the Welsh version of the service agreement, please click here: add link. Once you have completed the form, one of our callers will aim to give you a call within two weeks.

If you have any further questions, please see our FAQs.

About our funders

The Listening Support Service is supported by Barclays LifeSkills, Marie-Louise von Motesiczky Charitable Trust and, in Wales, by the Welsh Government.

Barclays LifeSkills is an employability programme that aims to help everyone in the UK to gain the skills, knowledge and confidence needed to succeed in work.

Marie-Louise von Motesiczky Charitable Trust is named after the acclaimed artist Marie-Louise von Motesiczky (1906-96), who cared for her mother in later life and produced several portraits of her.

The Listening Support Service in Wales is funded by the Welsh Government through the Sustainable Social Services Third Sector Grant.

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Caring can be very rewarding, but it can also feel isolating or challenging at times. The Listening Support Service offers a series of phone calls with someone who understands the ups and downs of caring and who can provide a listening ear.