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Use this column to say who you are, where you're from and why you're interested in personalisation.

The + button allows you to type into a box. Click outside of your post to make it appear.

You can comment on other people's posts, or simply click the heart button to 'like' their post.

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Use this column to make comments or pose questions to the presentations given in the first part of the webinar.

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Is there anything you feel we've missed that you'd like to raise? Please post it in this column.

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Feel free to share your thoughts on this first key question in this column. You can take this question in terms of both a concept and as an approach to supporting people with long-term conditions such as dementia .

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Feel free to share your thoughts on this second key question in this column.

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Welcome to the IDEAL programme website which includes information about IDEAL (2014-2019) and IDEAL-2 (2018-2022).

IDEAL is the largest study of living well with dementia in the UK. The evidence will enable the development of new policy, interventions and initiatives to transform the lives of people with dementia and their carers.

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Welcome to the IDEAL programme website which includes information about IDEAL (2014-2019) and IDEAL-2 (2018-2022). IDEAL is the largest study of living well with dementia in the UK. The evidence will enable the development of new policy, interventions and initiatives to transform the lives of people with dementia and their carers.

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This brief animation gives an overview of the IDEAL programme.

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Head of Nursing, Care & Dementia services Care UK

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Head of Nursing, Care & Dementia services Care UK

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Hello, I'm Shaun Popel , Research Coordinator at The Dementia Wellbeing Service (Partnership between Devon Partnership NHS Trust and Alzheimer's Society) providing dementia services in the Bristol locality.

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Hi Aimee Robson here, Deputy director of personalised care NHS England/NHS Improvement. I'm a physio by background and looking forward to joining you today.  

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Hi Aimee Robson here, Deputy director of personalised care NHS England/NHS Improvement. I'm a physio by background and looking forward to joining you today.  

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Hi - I'm Liz Copley Consultant OT for OPMH. Personalisation - getting this right and ensuring our services meet the needs of people living with dementia to enable them to live full and meaningful lives  is so important to the work I do and support

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Hi - I'm Liz Copley Consultant OT for OPMH. Personalisation - getting this right and ensuring our services meet the needs of people living with dementia to enable them to live full and meaningful lives  is so important to the work I do and support

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I''m Jan Oyebode, a clinical psychologist, and now Professor of Dementia Care at Uni of Bradford wtih a keen interest in diversity. I am therefore interested in ensuring personalisation meets the needs of those who are younger, have rare dementias or are from non-majority cultures in the UK.

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Michaela Morris: Improvement Cymru, PHW, Dementia Care Programme Lead

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Michaela Morris: Improvement Cymru, PHW, Dementia Care Programme Lead

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Hello, Reinhard Guss, Clinical Psychologist, formerly Chair of British Psychological Society's FAculty of Psychology of Older People and Dementia Lead. 30 Years of practice in working psychologically with people with dementia.

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Hello, Reinhard Guss, Clinical Psychologist, formerly Chair of British Psychological Society's FAculty of Psychology of Older People and Dementia Lead. 30 Years of practice in working psychologically with people with dementia.

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Hi all, Im Morgan - Policy Manager at Alzheimer's Society covering Social Care. Got a big contingent here from AS today, we're all very excited!

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Hi all, Im Morgan - Policy Manager at Alzheimer's Society covering Social Care. Got a big contingent here from AS today, we're all very excited!

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Derek Dodd Area Manager Alzheimer's Society

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Derek Dodd Area Manager Alzheimer's Society

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Hi all, Harrison Marsh, Regional Public Affairs and Campaigns Officer in the West Midlands for Alzheimer’s Society. 

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Hi all, Harrison Marsh, Regional Public Affairs and Campaigns Officer in the West Midlands for Alzheimer’s Society. 

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Hi everyone. I'm Toby Williamson, an independent health and social care consultant and member of IDEAL's advisory group.

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NHS Comprehensive Model of Personalised Care

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NHS Comprehensive Model of Personalised Care

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I believe (and hope!) this gives you the 6 points Aimee is talking about.

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This comprehensive model of personalised care establishes:

whole-population approaches to supporting people of all ages and their carers to manage their physical and mental health and wellbeing, build community resilience, and make informed decisions and choices when their health changes

a proactive and universal offer of support to people with long-term physical and mental health conditions to build knowledge, skills and confidence and to live well with their health condition

intensive and integrated approaches to empowering people with more complex needs to have greater choice and control over the care they receive.

The Model will helps us to deliver this shift by bringing together six, evidence-based components or programmes, each of which is defined by a standard set of practices. These are:

1. Shared decision making

2. Personalised care and support planning

3. Enabling choice, including legal rights to choice

4. Social prescribing and community-based support

5. Supported self-management

6. Personal health budgets and integrated personal budgets

Through these standard programmes there is a balance between specifying a national standard and enabling flexibility for local adaptation. We also build on existing personalised approaches that have been adopted by social care (and beyond) in many areas.

Evidence has shown that to realise the full benefits from personalised care, these components and programmes should be delivered together and in full, alongside key enablers which embed the necessary culture change - including strong system leadership, co-production and workforce engagement across the health and care system and in partnership with the voluntary and community sector.

Operating Model - updated

The updated Operating Model illustrates how all the various components work together to deliver a joined-up approach around the needs of each individual

Further information

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Comprehensive model of personalised care

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This comprehensive model of personalised care establishes: whole-population approaches to supporting people of all ages and their carers to manage their physical and mental health and wellbeing, build community resilience, and make informed decisions and choices when their health changes a proactive and universal offer of support to people with long-term physical and mental health conditions to build knowledge, skills and confidence and to live well with their health condition intensive and integrated approaches to empowering people with more complex needs to have greater choice and control over the care they receive.

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Personalised care gives patients more control and choice when it comes to the way their care is planned and delivered, taking into account individual needs, preferences and circumstances. Learn more about personalised care here.

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Personalised care gives patients more control and choice when it comes to the way their care is planned and delivered, taking into account individual needs, preferences and circumstances. Learn more about personalised care here.

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video summary of personalisation model by NHS

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Very valuable to hear the way that the NHS is defining personalised care. One issue which is often brought up in discussions about dementia but which is true for many long term conditions is that the person often finds they need to depend on family and friends for support over the long-term of their life with the condition. And, as a consequence, the condition not only impacts on the person but also on their close supporters. And that person's well-being can affect the well-being of the person with the long-term condition. So, while entirely agreeing that the person themselves needs choice and control, it would be vital for personalised care to extend to consideration of the choice and control of involved close family members. This is equally important, maynbe especially so, for communities who have high levels of 'familism' and for people with young onset dementia where children may be impacted too.

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Very valuable to hear the way that the NHS is defining personalised care. One issue which is often brought up in discussions about dementia but which is true for many long term conditions is that the person often finds they need to depend on family and friends for support over the long-term of their life with the condition. And, as a consequence, the condition not only impacts on the person but also on their close supporters. And that person's well-being can affect the well-being of the person with the long-term condition. So, while entirely agreeing that the person themselves needs choice and control, it would be vital for personalised care to extend to consideration of the choice and control of involved close family members. This is equally important, maynbe especially so, for communities who have high levels of 'familism' and for people with young onset dementia where children may be impacted too.

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Hi. I'm Jo Goddard from the Economic and Social Research Council, part of UK Research and Innovation, which funds the INCLUDE study.

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Hi. I'm Jo Goddard from the Economic and Social Research Council, part of UK Research and Innovation, which funds the INCLUDE study.

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It's great to meet you all today. I am one of the co-founders of the Sussex Dementia Golden Ticket - a composite, personalised model of care based in primary care but also offering 4 types of social prescribing to patients, a clinical dementia practitioner based in primary care, available daily for BLIP clinics as well as a 6 monthly MDT holistic physical and mental health reviews - now covering a population of 180,000 patients funded by a locally commissioned service. This model was co-designed with patients, the mental health trust, the voluntary sector and social services.  It also has a service for those with mild cognitive impairment.

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I'm Sue Evans an Occupational Therapist who has worked alongside Linda Clare and Jackie Pool on an personalised goal orientated cognitive rehabilitation intervention (GREAT project and GREAT iP) for people with early stage dementia.

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Hello I am one of the collaborators on the IDEAL programme led by Linda.

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Hi I'm Jane Ward, a former carer for my mum who had Vascular Dementia, I'm a member of the ALWAYS Group (part of the IDEAL Programme), a member of Alzheimer's Society Research Network and also work on the Dementia Friendly Communities Project in Hampshire.

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Hi I'm Jane Ward, a former carer for my mum who had Vascular Dementia, I'm a member of the ALWAYS Group (part of the IDEAL Programme), a member of Alzheimer's Society Research Network and also work on the Dementia Friendly Communities Project in Hampshire.

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Claire Pentecost IDEAL programme manager

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Claire Pentecost IDEAL programme manager

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Supporting your shared decision making through our guidance and tools

We're working to help put it at the centre of the way care and treatment is given.

For people receiving care

The care and support you receive should be based on your needs and what matters most to you.

You have the right to be involved in decisions with your healthcare professional. You should be able to make those decisions together.

Patient decision aids support conversations and help patients make informed choices. We've developed several tools to support shared decision making for specific conditions.

Read more about making decisions about your care.

For people delivering care

We have worked with Keele University to develop an online learning package that supports the shared decision making guideline. It aims to give healthcare professionals the skills and knowledge to have conversations with the people they are caring for.

We've updated all our guidance to highlight the importance of balancing professional judgment and expertise with the needs and wishes of people receiving care.

Read more about making decisions using NICE guidelines.

Patient decision aids

PDAs help people make informed choices about healthcare. This considers their personal values and preferences.

Our process guide outlines how we develop our PDAs.

The framework is designed for people who use PDAs, whether they are patients or clinicians. It helps them determine if the quality of the PDAs is sufficient.

It includes a simple self-assessment tool for people who produce PDAs so that they can quality check their processes and products.

Shared decision making collaborative

We work with over 40 partner organisations. With them, we support the wider health and care system to put shared decision making into routine practice. The aim is to make sure that people who deliver and receive care work together to provide what matters to the individual.

Our joint recommendations to encourage a shared decision making culture can be read in our consensus statement (Word).

The organisations we work with include:

Academy of Medical Royal Colleges

Advancing Quality Alliance

General Medical Council

Health Education England

Healthwatch England

NHS England and NHS Improvement

Newcastle University

University of Leeds

To get involved or to find out more, contact our shared decision making team.

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Information and benefits about shared decision making. Includes links to patient decision aids.

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Hello, Kelly Inwood. Area Manager Alzheimer's Society.

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Hello, Kelly Inwood. Area Manager Alzheimer's Society.

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Linda is talking about the research IDEAL has done to understand the different areas which affect living well. To read the full paper visit:

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Head of Nursing, Care & Dementia Services - Care UK

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"Personalisation" is essential to maintain the person with dementia's sense of self and keep control of their life and choices.

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Jane's comments on maintaining relationships is very important - we need to pay attention to core relationships from the start.

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Jane's comments on maintaining relationships is very important - we need to pay attention to core relationships from the start.

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Hello! Nori Graham  Chair of the IDEAL advisory group, Specialist adviser in mental health and dementia to Care Uk ,
Old Age Psychiatrist,
Vice President of Alzheimer’s Society and of ADI.

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Maybe we need to bear in mind the things that are distinctive in living with dementia. e.g. We need to ensure we take cognitive functioning into account so we provide the right sort of support to enable every person to exercise their choice, so staff who are negotiating shared decision-making need advanced communication skills.

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Maybe we need to bear in mind the things that are distinctive in living with dementia. e.g. We need to ensure we take cognitive functioning into account so we provide the right sort of support to enable every person to exercise their choice, so staff who are negotiating shared decision-making need advanced communication skills.

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I'm a Research Fellow working on INCLUDE, IDEAL and GREAT-iP

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those of us in clinical settings are so often conflicted between the decisions in those settings about 'risk' and 'case management'  versus personalised choices and preferences.  staff training and workforce development initiatives  help improve this but there is also something about power relationships and hierarchies that are difficult to address and don't seem to shift

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I think expectations need to be raised about what is possible in dementia - hope, futures, living well

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I think expectations need to be raised about what is possible in dementia - hope, futures, living well

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dementia still carries a lot of stigma, much more than many other long-term progrressaive conditions, so we need to tackle community awareness.

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dementia still carries a lot of stigma, much more than many other long-term progrressaive conditions, so we need to tackle community awareness.

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Although I accept paternalism is rife in other conditions - I do think it exists in dementia - especially when it collides with ageism

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Although I accept paternalism is rife in other conditions - I do think it exists in dementia - especially when it collides with ageism

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dementia may be unusual in that very many people are discharged to GP care - in other words, people with dementia are left on their own. They may be abandoned rather than empowered to self-manage. 

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dementia may be unusual in that very many people are discharged to GP care - in other words, people with dementia are left on their own. They may be abandoned rather than empowered to self-manage. 

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I'm a Geriatrician and collaborator on the IDEAL programme

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DCAN is the Dementia Chance Action Network. A partnership between Alzheimer's Society, NHS England and Improvement and Coalition for Collaborative Care. We are a shared equal space for people with dementia, friends, families to come together with professionals in Health, Social Care, Voluntary Sector to think about dementia and dementia support with personalisation principles in mind. Our work is shared and open to everyone. We have a website www.dcan.org.uk where we post news, blogs, events and projects. We are open to people to join too as members. Its free and gives people most chance to be involved in our work and projects.   Our focus for this year is exploring how people can be supported around diagnosis, immediately following a diagnosis and living their life through to end of life and palliative care in more personalised ways. We have started with support for people waiting for a memory assessment and the result of this work can be seen in our new website www.nextsteps.org.uk .

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This is the link to the full article

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Our work with young onset dementia found dimensions/needs in common with later onset but a key need, which is important for older people too but which shone through strongly for younger people, was the value of continuing positive connection with family, friends and peers. In addition it was important for people with young onset dementia to be enabled to continue to contribute to society. 

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Our work with young onset dementia found dimensions/needs in common with later onset but a key need, which is important for older people too but which shone through strongly for younger people, was the value of continuing positive connection with family, friends and peers. In addition it was important for people with young onset dementia to be enabled to continue to contribute to society. 

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I think it is important to look at how to support communities/neighbourhoods to facilitate the personalisationastion agenda. Christina 

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I think it is important to look at how to support communities/neighbourhoods to facilitate the personalisationastion agenda. Christina 

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I think a lot of health care professionals lack confidence to talk about dementia with their patients, beginning at the time of diagnosis ....but in particular towards the end of life. This means that it can be difficult for people to have the opportunity to get make their wishes known

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I think a lot of health care professionals lack confidence to talk about dementia with their patients, beginning at the time of diagnosis ....but in particular towards the end of life. This means that it can be difficult for people to have the opportunity to get make their wishes known

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I thin Liz G illustrates that some dementia care in primary care can be excellent. However, it is so important to ensure care is excellent everywhere - at Uni of Bradford we run a PG Cert for Practitioners with a Special Interest in dementia and have motivated students who are GPs but most don't know, even, there are different types of dementia as they have to have such a broad scope of knowledge across all health conditions.

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I thin Liz G illustrates that some dementia care in primary care can be excellent. However, it is so important to ensure care is excellent everywhere - at Uni of Bradford we run a PG Cert for Practitioners with a Special Interest in dementia and have motivated students who are GPs but most don't know, even, there are different types of dementia as they have to have such a broad scope of knowledge across all health conditions.

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We're talking a lot about personalisation 'for' people with dementia from health and social care. What needs to change, or be better to give PABD the control and confidence to enable personalisation?

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We're fortunate to be joined by a few people from the team who created the successful 'golden ticket' model in Sussex. https://www.health.org.uk/improvement-projects/the-dementia-%E2%80%98golden-ticket%E2%80%99-%E2%80%93-an-emerging-new-model-of-care

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I just wanted to share a link to our recent report from Alzheimer's Society, A Future for Personalised Care, where we worked with Linda and many others to understand the latest research on personalisation and make recommendations for a new more positive vision for social care. Definitely fits in line with much of what I've heard today, and would welcome feedback to Policy@Alzheimers.org.uk if anyone wants to share good practice and the like

https://www.alzheimers.org.uk/sites/default/files/2021-03/A%20Future%20for%20Personalised%20Care.pdf

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A website which always rewards a revisit! Find out what people with dementia can and will do.

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Two of the 20 standards in the wales dementia pathway of standards 1) every person entering the memory assessment process has a person to call and speak with during the period 2) following diagnosis will have a named connector from diagnosis to end of life - important to engage with people - anxieties, fear, planning etc - we are currently scoping what this role and function/purpose can look like to offer consistency across Wales. Scoping with all agencies and people with lived experience and carer

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Two of the 20 standards in the wales dementia pathway of standards 1) every person entering the memory assessment process has a person to call and speak with during the period 2) following diagnosis will have a named connector from diagnosis to end of life - important to engage with people - anxieties, fear, planning etc - we are currently scoping what this role and function/purpose can look like to offer consistency across Wales. Scoping with all agencies and people with lived experience and carer

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Any support available (that has been shared) in the community can be added and then accessed by anyone using the website after putting in the search postcode.

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Contains OS data © Crown copyright and database right 2023

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Source: Office for National Statistics licensed under the Open Government Licence v3.0

Contains public sector information licensed under the Open Government Licence v3.0.

Services are delivered in a variety of formats based on local circumstances. We've made it easier to find services that are held at a local venue or delivered online, over the telephone or in your own home. Please use the dementia directory above and click on the tabs in the search results to see what's available.

The services or providers listed in our dementia directory are not endorsed or checked by Alzheimer's Society. We strongly advise you to carry out your own checks, before accessing any services or providers. The guide below is not exhaustive, but may give you some ideas.

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Use our dementia directory to find local support services for people with dementia and their carers in England, Wales and Northern Ireland.

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'The Seven Selves of Dementia'

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The All Wales Dementia Care Pathway of Standards

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The All Wales Dementia Care Pathway of Standards

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(launched March 2021)

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Video on personalisation from the ALWAYs group

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Video on personalisation from the ALWAYs group

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This is the video which was shown at the webinar. With thanks to Rachael Litherland (Innovations in Dementia) for filming.