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Our online community is a supportive bereavement forum where you can share experiences and find others who understand, to help you through your grief.

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Sue Ryder supports people through the most difficult times of their lives. Whether that's a terminal illness, the loss of a loved one or a neurological condition - we're there when it matters.

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What is the Bereavement Charter for Scotland?

The Bereavement Charter describes a vision for how we can all work together to ensure adults, young people and children who are experiencing bereavement are supported.

There are also Bereavement Charter Guidance Notes that provide some more information about bereavement and the kind of support that people can find helpful.

Why do we need the Bereavement Charter?

Many of us will experience difficulties following the death of someone we know.

When that happens, it is important that we receive the support we need from the people around us. The people we know in our neighbourhood, at work or at school can help by being understanding of the situation, and by offering simple support.

The Bereavement Charter for Scotland has been created to raise awareness of the ways we can all support people who are experiencing bereavement.

Find out more

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The Bereavement Charter for Adults and Children in Scotland

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The Bereavement Charter describes a vision for how we can all work together to ensure adults, young people and children who are experiencing bereavement are supported. There are also Bereavement Charter Guidance Notes that provide some more information about bereavement and the kind of support that people can find helpful.

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Like anyone, a person with dementia may respond to bereavement in a range of ways. However, difficulties with thinking and reasoning may affect how they understand and adapt to the bereavement. This doesn't mean they are unable to experience loss and grief.

If the person who has died was the main carer of the person with dementia, it can also lead to lots of change in the person's life. They may need professional carers for the first time, or have new people around them providing care. In some cases the person may need to move into residential care. They are likely to need lots of support, guidance and assistance to adjust to these changes.

There are other things to think about when a person close to someone with dementia dies. This includes whether to tell the person, or whether they attend the funeral.

Should you tell a person with dementia that someone has died?

When someone close to a person with dementia dies, you may wonder whether to tell them. It can also be hard to know how much detail to give, especially if finding out how the person died could be distressing.

There are a few things to consider, such as the person's situation and their relationship to the person who died. If they are not told about the death it may mean they don't have a chance to grieve.

It may also leave them feeling confused and unsupported. For example, they may be aware that the person who has died has stopped visiting them, without knowing why. However, telling the person the truth may lead to avoidable distress and they could be unable to understand or remember the information.

If the person is in the early stages of dementia, it is usually a good idea to tell them about the death initially and see how they react to the news. This will give you an idea about what to do and whether to tell them again if they keep forgetting (see 'The person's past bereavements' below). If they are in the later stages, they are less likely to be able to understand so it may not be appropriate to tell them at all.

Whatever you decide to do, it is important to acknowledge and support the person with their feelings. Think about how to tell the person and what language to use.

There is no approach that works for every person and situation. Always do what you think is best for the person. It can be helpful to discuss what to do with a professional involved in the person's care such as a dementia specialist nurse, dementia support worker or a doctor.

Supporting a person with dementia to grieve

If the person with dementia is going through a bereavement, it's important to support them. Dementia may mean they struggle to do things they'd normally do to cope with a death, such as speaking to their friends or family about how they feel or keeping busy with hobbies or tasks.

Their dementia may also affect their ability to accept the death. Try to gently encourage them to communicate how they are feeling and try to help them keep active and busy. You might need to keep reminding them that help and support is available.

There are many ways that a person with dementia may respond to the death of someone close to them:

They may think there's another reason why the person is no longer around - for example, that they're at work or on holiday. This can be caused by denial, memory problems or 'confabulation' (where a person fills in memory gaps with things they believe are true). It may also be a combination of these things.

They may be more confused than normal and mistake others for the person who has died - for example, thinking their son is their husband. This can be caused by memory loss or problems recognising people.

How to know if the person is grieving

Sometimes it might be difficult to know whether a person with dementia is grieving. Changes in the brain mean they have difficulty communicating their feelings in the way they usually would.

Instead they may express their grief in different ways, such as through their behaviour. For example, they may become attached to one possession such as a coat or an ornament, or refuse to take part in an activity they usually enjoy.

If the person becomes withdrawn or behaves in ways that challenge, this may be a sign of distress at not being able to grieve as they need to. It can help to try and see if there are things that trigger their grief, such as a photo or an activity that they associate with the person who died. Identifying these triggers may help you find a way to avoid them.

You and the person with dementia may be grieving about the same person. This can make it harder for you to feel you can offer the person support. Remember to be kind to yourself and take your own feelings into account too.

Explaining past bereavements to a person with dementia

A person with dementia may forget about a past bereavement. This can be due to memory loss, confusion or time-shifting, which is when a person believes that they are living in an earlier time in their life.

They may think that people who have died are still alive and ask you where they are. Telling the person may shock and upset them, as for some people it will feel like the first time they have heard the news.

As they are likely to have short-term memory problems, they could experience the shock of grief repeatedly if they continue to be told every time they ask. Explaining that the death happened a long time ago may add to their confusion.

Think about whether it is in the person's best interests to continue to be told this news. If you do choose to tell the person more than once, try to give them the news in a sensitive and compassionate way, offering warmth and support. It is important to gauge how they respond and make a decision about what is in their best interests.

If the person is in the later stages of dementia and remembers a bereavement they've had in the past, they may not be able to communicate this. Instead it may show in their mood or behaviour - for example, they may be crying a lot more or be more agitated.

This can explain changes in their mood or behaviour that don't otherwise seem to have an obvious cause. For example, if the person has had periods of isolation due to coronavirus restrictions, this might have brought up difficult feelings and memories of past bereavements.

More information on how to communicate with a person with dementia.

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Supporting a person with dementia during a bereavement

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There are lots of things to think about when a person close to someone with dementia dies. Read our advice about telling a person with dementia about a death.

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AtaLoss.org: UK wide bereavement signposting and information website

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Find Support | Talk to a Counsellor — AtaLoss.org: UK wide bereavement signposting and information website

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Access immediate bereavement support and resources tailored to your needs with AtaLoss, the UK’s dedicated site for the bereaved.

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The Golden Rule by Lucy Pollock | Waterstones

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Buy The Golden Rule by Lucy Pollock from Waterstones today! Click and Collect from your local Waterstones or get FREE UK delivery on orders over £25.

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Still Alice by Lisa Genova | Waterstones

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Buy Still Alice by Lisa Genova from Waterstones today! Click and Collect from your local Waterstones or get FREE UK delivery on orders over £25.

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SPICT™ helps identify people with deteriorating health due to advanced conditions or a serious illness, and prompts holistic assessment and future care planning. SPICT™ is available in multiple translations. SPICT-4ALL™ uses non-medical language.

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Supportive and Palliative Care Indicators Tool

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What does "What matters to you?" mean?

As healthcare professionals, we want to promote careful, kind human interactions. Asking "What matters to you?" is about understanding what matters to an individual in their life. It's about having meaningful conversations with individuals, as well as their families and carers.

These conversations can help inform decisions about a person's health and care. When we engage with individuals about their health and care decisions, it can greatly improve their wellbeing and outcomes.

Help us celebrate 'What matters to you?' Day on 6 June

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As healthcare professionals, we want to promote careful, kind human interactions. Asking "What matters to you?" is about understanding what matters to an individual in their life. It's about having meaningful conversations with individuals, as well as their families and carers. These conversations can help inform decisions about a person's health and care.

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What to expect in the last moments before death

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It can be difficult to know exactly when someone is going to die or has died. Here are some of the most common signs in the last moments before death.

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What Happens As We Die? | Kathryn Mannix | TED

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Why Don't We Talk About Dying? | Dr. Kathryn Mannix | TEDxYouth@DúnLaoghaire

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Heart-stopping Moments | Dr. Kathryn Mannix | TEDxDunLaoghaire

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Welcome to the Association for Palliative Medicine

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Welcome to the Association for Palliative Medicine, championing clinical leadership and care to alleviate suffering in life-limiting illnesses.

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11 November 2021

End of life care for people with diabetes continues to be under investigated and there is a dearth of guidelines, recommendations, and research into this topic. Caring for people with diabetes as they approach the last year, month and days of life often falls to non-diabetes specialist healthcare professionals, so it is important that clear clinical recommendations are accessible to promote good quality care.

Throughout a person with diabetes' lifespan there is a real focus on meeting clinical targets and avoiding long term micro and macrovascular complications. It is understandable that in the last year of life the relaxation of targets can cause some concern and distress to both the person living with diabetes, their family or carers. The multiplicity of insulin and non-insulin therapies available can make end of life care complicated so it is important that information relating to these medications and possible withdrawal of diabetes therapies, in some cases, is easy to access.

The recommendations are updated regularly and this is the fourth edition.
Download End of Life Guidance for Diabetes Care (PDF, 5.7MB)

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11 November 2021 End of life care for people with diabetes continues to be under investigated and there is a dearth of guidelines, recommendations, and research into this topic. Caring for people with diabetes as they approach the last year, month and days of life often falls to non-diabetes specialist healthcare professionals, so it is important that clear clinical recommendations are accessible to promote good quality care.

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We are pleased to launch the first version of our new RDS Learning and support toolkit. This provides:

For end-users - videoclips on how to navigate and download the RDS web and mobile app.

For RDS editors - guidance, videoclips, tools and a quiz on the basic features of building RDS resources.

We will be adding to this resource over time and welcome your feedback and suggestions.

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We are pleased to launch the first version of our new RDS Learning and support toolkit. This provides: For end-users - videoclips on how to navigate and download the RDS web and mobile app. For RDS editors - guidance, videoclips, tools and a quiz on the basic features of building RDS resources.

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Description

Toolkit for healthcare professionals to support patients nearing the end of life to live well until they die.

Approximately 1% of the UK's population die each year, and within that population the majority of deaths can be predicted. Evidence has found that early identification of patients who are likely to die within the next 12 months often enables well coordinated, pro-active quality care, and allows healthcare professionals to focus on better meeting patients' needs. It has been developed in partnership with Marie Curie and the Clinical Innovation and Research Centre.

The End of Life and Palliative Care Toolkit provides a collection of tools, knowledge, and current guidance for healthcare professionals to support patients nearing the end of life to live well until they die. The resources include information for patients and those close to them.

Who is the End of Life and Palliative Care Toolkit for?

Any general practice in the UK can use the toolkit. The resources are for healthcare professionals, informal carers, patients and those close to them.

For resources related to end of life care and COVID-19, visit the dedicated section on our COVID-19 Resource Hub.

The toolkit will be updated on a regular basis. Please send any comments or suggestions to daffodilstandards@rcgp.org.uk

What is the RCGP and Marie Curie Daffodil Standards?

The Daffodil Standards are a blend of quality statements, evidence-based tools, reflective learning exercises and quality improvement steps.

The Standards offer a structure, enabling practices to be proactive organisations in which continuous learning and quality improvement steps are an integral part of caring for people affected by Advanced Serious Illness and End of Life Care.

The Daffodil Standards can be accessed for free at: www.rcgp.org.uk/daffodilstandards

By signing up to the Daffodil Standards, your practice has taken an important step towards improving end of life care. Practices can register now to receive a welcome pack. Your Daffodil Standards welcome pack will include notebooks, pens, posters and leaflets for you and your team, as well as the Daffodil Mark, which can be displayed to highlight the practice's commitment to excellent end of life care and support for people with advanced serious illness.

As a patient nears the end of life, a holistic approach is recommended. This approach involves early identification of those likely to be in the last few months of life, discussion of end of life issues with patients and those close to them and provision of high quality care. The process continues after death with support for those left behind as well as reflective practice and audit for the practice team.

In this section:

Current policy best practice

The following resources may be used to determine if a patient is nearing the end of life, and give recommendations of how treatment should be tailored to their specific requirements.

Clinical treatment guidance

The following resources provide best practice guidance for clinical treatment of a patient nearing the end of life.

Communicating with patients and those close to them

Current legislation promotes frequent detailed communication between healthcare professionals and patients, their families and others. These tools may be used to communicate with your patients and their support network.

Current knowledge sources

Legislation and knowledge relating to end of life processes is often changing. The following resources provide ongoing forums and updates in which healthcare professionals may keep abreast of current knowledge.

Quality Improvement

To access shared learning networks to assist you in applying practical QI methodologies to better treat this clinical area, join our QI Ready platform.

A range of bereavement resources aimed to help general practice provide information and signposting to bereaved patients and families.

In partnership with Marie Curie:

Supporting your patient through loss (animation): overview guide for practices on tips to strengthen bereavement support. These include supporting bereaved people to ask for help from the practice if they need additional support, giving a compassionate bereavement response, signposting to support information and services and using consistent coding to help trigger potential condolence contact and sharing information on how to reach support in the community.

The Grief Support Guide provides information on the variety of bereavement support that is available in the UK, from self-help resources and helplines to peer support groups and grief counselling. The Guide also includes details of support for specific groups of bereaved people, e.g., widow(er)s, children, cultural and faith groups and people bereaved by particular types of death.

The free guide can be downloaded at: www.nationalbereavementalliance.org.uk/support

In partnership with Cruse Bereavement Support:

VBA, very brief advice framework for GPs to provide a consistent and compassionate response to grieving patients - England, Wales, and NI (216 KB, PDF)

VBA, very brief advice framework for GPs to provide a consistent and compassionate response to grieving patients - Scotland (532 KB, PDF)

Animation explainer on VBA, Very Brief Advice framework for GP staff - A compassionate bereavement response (Cruse Bereavement Support YouTube channel)

Looking for support after the loss of someone close?: a patient poster for GP waiting rooms across the UK, telling people how best to speak to their GP about grief they may be feeling - England, Wales, and NI (651 KB, PDF)

Looking for support after the loss of someone close?: a patient poster for GP waiting rooms across the UK, telling people how best to speak to their GP about grief they may be feeling - Scotland (523 KB, PDF)

Sign up for free to the Daffodil Standards

To assess how well your practice is supporting bereaved people and to make the most of using the above bereavement resources, read more about Daffodil Standard 7 - Care after Death.

Patient resources: Planning ahead

These resources may be shared with patients who have been diagnosed as likely to die within the next 12 months. They provide information for the patient to plan ahead and decide on their care pathway.

Resources for those close to a dying patient

The following resources are appropriate to share with informal carers and those close to a patient who is dying. These resources aim to support individuals affected by the end of life process happening to those close to them.

Resources and guidance for patients and carers

Clinical resources and guidance for practices

With the demise of the Liverpool Care Pathway, there has been much activity and collaborative working between groups involved with end of life care. Current national reports and legal guidelines for healthcare professionals to follow when caring for a person nearing end of life are found in this section.

Training resources to help fulfil CPD and revalidation requirements.

Further study and learning modules for practitioners

As well as reflective practice within local palliative care meetings, such as a practice Gold Standards Framework (GSF) meeting, clinicians are also able to access study days, online learning modules and post-graduate qualifications.

Autism Spectrum Conditions: end of life care and accessing healthcare services

A YouTube guide for clinicians made in partnership with Marie Curie.

Audit

Clinicians and practices may carry out their own audits as part of the GSF meetings and to fulfil their Care Quality Commission obligations. Online tools are also available to help meet this requirement.

Following the phasing out of the Liverpool Care Pathway (LCP) in 2014, new guidance for approaching a dying person was issued by the Leadership Alliance for the Care of Dying People. The current guidelines make the dying person the focus of care in the last few days and hours of life and exemplify the high-level outcomes that must be delivered for every dying person. The way in which care varies is relative to the holistic needs of the individual, and the setting in which they are being cared for.

Developed in partnership with the Clinical Innovation and Research Centre, the guidance and resources within the End of Life and Palliative Care toolkit reflect current guidelines, and provide a toolkit that general practitioners may refer to when working with a patient who is nearing the end of their life.

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end of life and palliative care toolkit | rcgp learning

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End of life and palliative care toolkit | RCGP Learning

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Toolkit for healthcare professionals to support patients nearing the end of life to live well until they die.

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Good palliative care modules

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Our elearning programmes are developed in partnership with the NHS, 3rd sector and professional bodies and can be accessed for free, 24/7 by health and care professionals.

To access the elearning please sign in.

To access the elearning please register and create an account.

Browse our catalogue to see the elearning programmes that are available.

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Episode 7: geriatrics and palliative | RCP Player

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RCP Player offers healthcare professionals the latest medical updates through webinars, videos and podcasts. Explore our wide range of resources today.

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Presented by: Iain Wilkinson, Jo Preston, Sophie Norman

Broadcast date: 08/06/2021

Knowledge

To know of some of the ways of classifying/staging grief are

To learn about 'complex' or 'atypical' grief reactions and the risk factors for developing these

Skills

To be able to identify ways to intervene or provide support to people experiencing loss

Attitudes

To have an awareness of how bereavement may affect older people uniquely

To acknowledge the unique experience of grieving for a loved one with dementia

CPD Log
Show Notes Definitions
Bereavement: a state of loss, or the period time after the loss of a loved one

Grief: a bio-psycho-social response/reaction to a bereavement.

ie; referring to the psychological components of bereavement: the feelings evoked when a loved one dies
Independent Age, Good grief report: Older people's experiences of partner bereavement "The study of grief is first and foremost a study of love and of the attachments humans create in their lifetime"
(Colin Murray Parkes, Psychiatrist and former chairman/now life president of the charity Cruse bereavement care)

Theories of grief and how we might classify and describe it

These stages have been widely taught over the last few decades, and are;

Elizabeth Kubler-Ross, was a Swiss-American psychiatrist, and put forward the stages in her book on death and dying.

Widely taught to health care professionals working with people experiencing loss

This is not a prescriptive process, and people do not necessarily progress through the stages in a step-wise fashion or experience all of the stages

Criticism of the model

However....

Some suggest that perhaps it is best to view the stages in the context of the experience of the individuals she interviewed, acknowledge the criticisms of the model but also value her emphasis on active listening, and her focus on the patients experiencing terminal diagnoses and loss themselves.
Corr CA. Should We Incorporate the Work of Elisabeth Kübler-Ross in Our Current Teaching and Practice and, If So, How? Omega (Westport). 2019 Jul 31:30222819865397. PMID: 31366311. Stroebe M, Schut H, Boerner K. Cautioning Health-Care Professionals. Omega (Westport). 2017;74(4):455-473. PMID: 28355991 Bregman L. Kübler-Ross and the Re-visioning of Death as Loss: Religious Appropriation and Responses. J Pastoral Care Counsel. 2019 Mar;73(1):4-8. doi: 10.1177/1542305019831943. PMID: 30895849.

Worden (2009) suggested the following 4 things may need to occur to enable an individual to adapt to loss:

(taken from: Clark, E. Loss and Suffering: the role of social work. Available at:
https://www.socialworker.com/feature-articles/practice/loss-and-suffering-the-role-of-social-work/)
Other theories of grief do exist (stroebe and schut, silverman and klass)
Theories around loss & bereavement, available at https://www.sth.nhs.uk/clientfiles/File/Theory%20of%20Loss.pdf

And another way of looking at the grieving process - as a timeline:

Independent Age, Good grief report: Older people's experiences of partner bereavement
Prolonged grief disorder, or complicated grief (disordered grief, pathological grief)

Included in the WHO ICD-11, to take effect from January 2022.

Risk factors:

Past history of depression and anxiety

Nature of relationship to the person who has died (increased risk if deceased is a spouse or child)

How the person died - sudden or traumatic deaths

Lack of social support

Hospital and ICU deaths

Lack of preparation for the death

This is a condition separate to depression, PTSD and attachment/separation disorders/anxiety

For eg, depression may make people feel their feelings are muted, or they do not long for/yearn for things. In PGD, emotions are often heightened.

Characterised by longing for, and preoccupation with the deceased, and emotional distress and significant functional impairment lasting for more than 6 months after the loss.

Given the need for this to be internationally applicable, cultural variations are accounted for/cultural caveats included.

Eg timeframe - in germany, a period of mourning for a year ('trauerjahr') is culturally accepted, and the symptom profile might vary from culture to culture.
Killikelly C, Maercker A. Prolonged grief disorder for ICD-11: the primacy of clinical utility and international applicability. Eur J Psychotraumatol. 2018 Jun 6;8(Suppl 6):1476441 PMID: 29887976 American Psychological Association, New paths for people with prolonged grief disorder. Available at https://www.apa.org/monitor/2018/11/ce-corner#:~:text=The%20ICD%2D11%20describes%20prolonged,least%20six%20months%20after%20loss
While it might be assumed that older adults will cope better with grief, a recent literature review identified similar proportions of older adults experiencing PGD, compared with younger ones, at about 1 in every 10 people experiencing loss.
Thiemann P, Street AN, Heath SE, Quince T, Kuhn I, Barclay S. Prolonged grief disorder prevalence in adults 65 years and over: a systematic review. BMJ Support Palliat Care. 2021 Mar 11:bmjspcare-2020-002845. PMID: 33707297.
Current treatments for CGD include CGT (complicated grief therapy), delivered by trained psychotherapists. This focuses on acceptance of the loss, connecting with memories, and thinking about the future, amongst other things.
Shear et al. Bereavement and Complicated Grief. Curr Psychiatry Rep. 2013 Nov; 15(11): 10.1007/s11920-013-0406-z. PMID: 24068457
Relevant to the COVID -19 pandemic

Factors which may make the grief/bereavement different/more difficult:

Isolation

Remote conversations with HCPs

Loved ones dying alone

Multiple deaths

Unable to visit, or unable to travel

Unable to perform cultural rituals

An argument made by Morris et al in a 2020 article talking about bereavement and loss during the pandemic is that bereavement support should be seen as a public health measure, and a preventative intervention. They acknowledge bereavement support is not universal in hospitals and should be provided prior to and after a loss to avoid complex grief reactions.

This sentiment was echoed in a survey published in the BMJ by Pearce et al: it was of UK health and social care workers, which reported that the pandemic had caused major problems in the delivery of bereavement support, and identification of those who might need it, as well as access to specialist care and support for those experiencing complicated grief reactions. They concluded that bereavement care and support needs to be seen as an integral part of health and social care provision.
Pearce C, Honey JR, Lovick R, et al. 'A silent epidemic of grief': a survey of bereavement care provision in the UK and Ireland during the COVID-19 pandemic. BMJ Open 2021;11:e046872. Morris SE et al. Caring for Bereaved Family Members During the COVID-19 Pandemic: Before and After the Death of a Patient. J Pain Symptom Manage. 2020;60(2):e70-e74.
What makes grief different for older people?

Loss of a partner/siblings/friends puts older people in the majority of those experiencing grief.

Older adults are less likely to both seek and receive help and support in grief

They are also more likely to experience multiple bereavements in a relatively short period of time

They are less likely to have received formal support from hospice/pall care services than younger people - which worsens the experience of grief
Independent Age, Good grief report: Older people's experiences of partner bereavement
What wider effects can grief have, aside from the emotional, psychological and spiritual impact/pain that the loss causes?

For the 'older old' (>85) grief compounds existing age related problems
Men and women

Men experience more isolation.

Women experience financial and practical difficulties

Isolation
Nearly a third of bereaved people over 65 see themselves as very lonely, compared to just 5% of people of the same age who have not lost their partner.

More than 1 in 5 people said that loneliness was the hardest thing to cope with after the death of their partner.

Older people who are carers for their dying partner are at greater risk of feeling lonely both before and after their partner dies.
Independent Age, Good grief report: Older people's experiences of partner bereavement Sleep
Poor sleep is associated with grief

One study from this year looking at middle aged and older aged people found an association between poor sleep (in many forms) and grief

The study continued to follow people over time, and those with less sleep at baseline, tended to experience longer or more complicated grief reactions
de Feijter M et al. The longitudinal association of actigraphy-estimated sleep with grief in middle-aged and elderly persons. J Psychiatr Res. 2021 May;137:66-72. PMID: 33657460.
Partner loss

This, and child loss, is often felt to be one of the most difficult losses to bear.

There is a higher risk for developing a complicated grief reaction when a spouse/partner is lost than following the loss of a parent, for example.
Aoun SM et al. Who needs bereavement support? A population based survey of bereavement risk and support need. PLoS One. 2015;10(3):e0121101. Physical health and increased mortality after loss, is seen mainly after partner loss

An old study, but with simple recommendations/points to consider;

In men >75 in the first 6 months after partner loss, there were excess deaths recorded compared to men of the same age in the population

Independent predictors for mortality in the sample studied were

1) interviewer assessment of low happiness level

2) interviewer assessed and self-reported problems with nerves and depression

3) lack of telephone contacts
Bowling A, Charlton J. Risk factors for mortality after bereavement: a logistic regression analysis. J R Coll Gen Pract. 1987 Dec;37(305):551-4. PMID: 3503942; PMCID: PMC1711190.
More recently, and published in age and ageing in 2009, Anne Bowling looked again at data re mortality from the group of 361 older people widowed and interviewed in the 1980s.
Ann Bowling, Predictors of mortality among a national sample of elderly widowed people: analysis of 28-year mortality rates, Age and Ageing, Volume 38, Issue 5, September 2009, Pages 527-530,
The true effect of the loss of a spouse on physical health/mortality is not entirely clear from the studies that we found when looking into this for the episode, with some reporting different outcomes.

However, risk of death after bereavement from CV causes does seem to be consistently reported

..and a 2007 study from scotland reporting increased relative risk of mortality in those bereaved vs those from cardiovascular disease, coronary heart disease, stroke, all cancer, lung cancer, smoking‐related cancer, and accidents or violence
Hart CL, Hole DJ, Lawlor DA, Smith GD, Lever TF. Effect of conjugal bereavement on mortality of the bereaved spouse in participants of the Renfrew/Paisley Study. J Epidemiol Community Health. 2007 May;61(5):455-60. PMID: 17435215 Mostofsky E et al Risk of acute myocardial infarction after the death of a significant person in one's life: the Determinants of Myocardial Infarction Onset Study. Circulation. 2012 Jan 24;125(3):491-6. PMID: 22230481
This is not what was found by King et al in 2013, looking specifically at partners of people who had died from cancer, where interestingly the risk of death following the bereavement was less than non-bereaved counterparts.
King M et al. Mortality and medical care after bereavement: a general practice cohort study. PLoS One. 2013;8(1):e5256 PMID: 23372651
LGBTQ+ experiences
10.5 LGBTQ+ Older Adults - The Hearing Aid Podcasts
BAME experience of grief and loss

Dementia - a special case

The concept of 'caregiver-burden' has been well linked to stress, depression and grief amongst people looking after relatives/friends with dementia.

And a term 'dementia grief ' has been coined by Blandin et al, overlapping with the idea of anticipatory grief, but encompassing things unique to the experience of looking after a loved one with dementia. They suggest 3 elements;

Compounded serial loss

Ambiguous loss

Lack of clarity, due to fluctuant nature of impairments, or to changing/lost characteristics, or to the fact that there is loss of function/capacity for some things (eg to reconcile over previous disagreements, or loss of particular memories), but not loss of the person themselves

Receding of the known self

The loss of characteristics, personality, memories etc of the person with dementia, to the point at times when the person does not remember who the caregiver is
Blandin K, Pepin R. Dementia grief: A theoretical model of a unique grief experience. Dementia (London). 2017 Jan;16(1):67-78. PMID: 25883036
Risk factors for caregivers developing complicated grief after death of the patient with dementia

People who received psychosocial interventions and support for depression and 'burden' had lower levels of psychiatric morbidity following their loss.
Schulz R et al. Predictors of complicated grief among dementia caregivers: a prospective study of bereavement. Am J Geriatr Psychiatry. 2006 Aug;14(8):650-8. PMID: 16861369.
A 2007 paper from Sanders et al looking at people caring for a loved one with dementia identified 7 themes that were common to those who were deemed to be experiencing high levels of grief

yearning for the past

regret and guilt

isolation

restricted freedom

life stressors

systemic issues adding to caregiver stress

coping strategies of religious groups, social groups and pets

Could we identify some of these things early and intervene to reduce morbidity?
Sanders S et al .The Experience of High Levels of Grief in Caregivers of Persons with Alzheimer's Disease and Related Dementia, Death Studies, 32:6, 495-523,
How well do we support people?
ONS, National survey of bereaved people (VOICES) (2015-16)
One of the questions asked if family/friends got as much help and support from H+S care as was needed when caring for them in the 3 months prior to death

For the question concerning whether the relative/friend/carer had had the chance to talk to people from health or social care or specialist bereavement services:
Dataset:National Survey of Bereaved People (VOICES)
What can we do?

The NICE Quality Standard: End of Life Care for Adults touches on bereavement support:

Quality statement: People closely affected by a death are communicated with in a sensitive way and are offered immediate and ongoing bereavement, emotional and spiritual support appropriate to their needs and preferences.

It specifies the need to recognise particular needs of vulnerable groups eg those with LD

It acknowledges local services should be developed with community, acute, voluntary and private organisations

Support might include

Practical eg funeral arrangements, what to do with medications/equipment

Emotional

Information about

Quality statement 14: Care after death - bereavement support | End of life care for adults | Quality standards 9.08 Learning Disabilities in Later Life - The Hearing Aid Podcasts
When it comes to talking to families/patients about loss Macmillan explains that listening, and acknowledging what has happened, and signposting to specialist resources is something everyone can do. They suggest considering the following questions
Bereavement resource for health and social care professionals. Accessed on https://www.macmillan.org.uk/coronavirus/healthcare-professionals/bereavement-resource-for-health-and-social-care-professionals

Support Around Death: Communication with those who are bereaved. Accessed via http://www.sad.scot.nhs.uk/bereavement/communication-with-those-who-are-bereaved/
Staff experiences of patient loss

This can be a difficult thing to talk about

This has been particularly difficult for everyone over the last year, but those looking after older people may have been really significantly affected, because of the nature of COVID-19 and the proportion of those who died being overwhelmingly in the older age bracket.

Things to consider that have made it particularly hard

Staff working in new environments, perhaps with dying patients when usually this is not something they do

Lack of time to process grief and feelings of loss

The unique experience of social care workers, or care home workers, who may have long term professional relationships with patients who have died

Restrictions on family/friend visits

The number of deaths witnessed/experienced

Personal experiences of loss

Marie Curie: Care workers need time to reflect and grieve after this year. Accessed via https://www.mariecurie.org.uk/blog/care-workers-grief/291354
There are some brilliant resources from macmillan, produced because of the pandemic but applicable at other times too;

They cover what bereavement and grief is, why things are harder in the context of the pandemic, what we can do for patients but also how to deal with personal losses, including that of colleagues. There is signposting to lots of resources, including ones tailored to specific situations and jobs.

They also cover emotional wellbeing, physical health, resilience, connectedness and personal growth in the context of bereavement - both giving background to why these things are important, and provide lots of resources like self-guided mindfulness exercises and information on accessing more formal/expert support.
Macmillan Emotional Health and Well-being Hub. Accessed via https://www.macmillan.org.uk/coronavirus/healthcare-professionals/wellbeing
NHS England also have some guidance for people in more senior positions, on looking after their staff in situations where there is loss and grief.
NHS England " Guidance on good leadership during bereavement and complex grief. Accessed via https://www.england.nhs.uk/supporting-our-nhs-people/how-to-guides/bereavement-support-covid-19/good-leadership-bereavement-complex-grief/
If there is anything this episode has affected you, we will include in the show notes links to resources that provide help and support - for you, for loved ones and for patients.

Resources and information if you are looking for more information or support (for your patients, or yourself)

From the NHS for staff:
https://people.nhs.uk/
And from the government, signposting to places of support:
https://www.gov.uk/government/publications/steps-to-take-following-the-death-of-a-person-who-worked-in-adult-social-care-in-england/bereavement-resources-for-the-social-care-workforce
Independent charities and groups:
https://www.cruse.org.uk/get-help/useful-links#Adult https://www.cruse.org.uk/get-help/useful-links https://www.mariecurie.org.uk/help/support/bereavement https://www.bps.org.uk/sites/www.bps.org.uk/files/Policy/Policy%20-%20Files/Supporting%20yourself%20and%20others.pdf https://www.nursingcenter.com/ce_articleprint?an=00000446-201907000-00025
Independant Age:
https://www.independentage.org/news-media/press-releases/older-bereaved-people-are-up-to-four-times-more-likely-to-experience#:~:text=Bereavement%20in%20older%20age%20can,huge%20difference%20to%20their%20wellbeing
Age UK:
https://www.ageuk.org.uk/globalassets/age-uk/documents/information-guides/ageukig32_bereavement_inf.pdf https://deathcafe.com/ https://switchboard.lgbt/?gclid=CjwKCAjwqvyFBhB7EiwAER786dsvZwLKz-4OLW_tDQeH6rHczUys9dLDxV8md0_SaJgkYCBiE8Cp8hoCbS0QAvD_BwE https://cariadlloyd.com/griefcast https://www.openingdoorslondon.org.uk/who-we-are https://www.samaritans.org/
NHS Knowledge Skills Framework

level 3 Develop and maintain communication with people about difficult matters and/or in difficult situations

Foundation Programme

GPVTS

Life stages topic guides - People at the end of life
Financial implications for patients and their carers including access to benefits

Approaches to supporting families and carers after bereavement need to take into account religious, spiritual and cultural beliefs and practices

Care giver 'pressure points and distress'

Recognition of complex grief signs and symptoms (to align with changing ICD code)

Internal Medicine Stage 1

Specialty CiP: Managing end of life and applying palliative care skills

Palliative medicine and end of life care

Geriatric Medicine Specialty Training

Clinical CiP 8: Managing end of life and applying palliative care skills

Palliative Care

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