I have had the privilege recently, of working with CommonAge, on their production of the “Dementia in the Commonwealth Report” launched September 2024. CommonAge is a charity, and an accredited civil society NGO within the Commonwealth family of associations, focused on creating an ‘all-age inclusive Commonwealth[1].
I work part time for Compassionate Communities UK a charity advocating a public health approach to death, dying, loss and caregiving. I spend the other half of my time on freelance assignments which are often related to equity, diversity and inclusion, or health service strategy and organisational development.
Public health palliative and end of life care (PHPEOLC) is an approach within the field of palliative care that goes beyond traditional models that focus on illness, disease and symptom management. In addition, PHPEOLC is interested in health promotion traditions such as community development, practice development, social ecology, health policy, service redesign, health and death literacy and public education. PHPEOLC policy is also interested in prevention, harm reduction, care and support. It has an additional focus on health and wellbeing including social morbidities such as job loss, loneliness, stigma, non-attendance at school etc [1].
PHPEOLC is relevant to everyone as we are all impacted by death, dying, loss and/or caregiving. It focuses on all people in ways that are socially and culturally appropriate, without exclusion of any disease or any part of society. As part of the field of PHPEOLC there is a Compassionate City Charter, endorsed by the United Nations encouraging all parts of society to get involved including schools, businesses, neighbourhoods, statutory services, citizens, places of worship, arts and museums etc. [2]
This blog shares my thinking, in the context of public health palliative and end of life care, from being involved in the production of the “Dementia in the Commonwealth Report” for CommonAge.
The report includes 28 articles from across the Commonwealth, sharing solutions, challenges and perspectives on dementia. The World Health Organisation and Alzheimer’s Disease International express dementia as a public health priority, with one new case occurring across the globe every 3 seconds. The report is designed for health ministers, governments, health, care and community development practitioners to help provide ideas and insights to help inform policy and practice.
Palliative care is mentioned in the report and there are some National Dementia Plans which include specific reference to PHPEOLC. A good example is the National Dementia Plan of Canada.
The fields of palliative care, dementia care and hospice care have not necessarily come together smoothly. There are some English hospices doing some great work in the field of dementia such as the Heart of Kent Hospice and the Dougie Mac in Stoke. However, in 2019 when I completed my doctorate on the subject, very few hospices were providing support to people with dementia.
My research demonstrated that all but 1 hospice surveyed of 83 wanted to help, but most weren’t sure how or had barriers such as capacity and funding that prevented such service developments. My research also indicated that for some, dementia was not seen as needing ‘specialist palliative care’ and therefore was not a role for ‘specialist palliative care practitioners’.
Issues around identity of services, charities and professional roles all added complexity to the question of how hospices could best support people living with dementia.
We recognise that for many, including professionals, talking about death and dying is difficult. Combine that with the taboo of talking about dementia, or talking about death in the context of dementia, ensuring that people living with dementia have access to palliative care, was always going to be a challenge!
PHPEOLC provides a solution. A solution that through the fields of health promotion and community development can start to break down barriers and improve access to appropriate support, socially and clinically.
In starting working with CommonAge on the “Dementia in the Commonwealth Report”, I was curious as to whether palliative care would be mentioned. I was able to refer to The Advance Project in Australia and highlighted three areas in England which have connected their work in the field of dementia to their Compassionate City programme, namely Birmingham, Coventry and Essex [3].
As Compassionate Communities UK, when we start working with a place interested in a public health approach, we talk about treasure mapping. Finding out all the great work that is already happening on the ground, in communities, in neighbourhoods, in shops and cafes etc.
The best part of working on the “Dementia in the Commonwealth Report” was to receive articles that share the treasures out in communities internationally that are supporting people living with dementia and their carers. High and middle-income countries will often describe low-income countries as deprived; we do the same within England when describing different communities. However, these measurements are based on economic measure not social ones. We find so called ‘deprived’ areas can be incredibly socially rich, filled with treasures.
The scale of the dementia challenge is vast, and the difficulty is that no country is only facing dementia as a priority. Climate change, politically and economic instability, war, poverty etc are also significant challenges for many Commonwealth nations. However, there is much room for optimism in the report.
The “Dementia Café of Ipoh” in Malaysia is a good example of a ground-up initiative by people impacted by dementia working together with healthcare providers to empower families and informal carers with knowledge on ways to slow down cognitive decline and reduce their risk of developing dementia. The café also provides an assortment of activities for people with varied interests and abilities. [3, p. 20].
A great innovation is the “Find Your Way” initiative by a local transport provider, SBS Transport in Singapore, aimed to help people with mild dementia to continue taking public transport confidently and safely by having coloured-coded nostalgic murals and directional floor arrows to assist in wayfinding and orientation at bus interchanges and MRT stations [3, p. 21].
In South Africa, a range of organisations are working to emphasise the importance of creating inclusive societies where people with dementia can live with dignity and flourish. They also highlight the need for targeted education and awareness programmes that reduce stigma and promote understanding.
The ARDSI Calcutta Chapter, in India, offers awareness programmes in clubs, schools, colleges, government offices, hospitals and social organisations. Reaching out to young members of society and using social media is helping people to be “tuned in sensitively to the cause and spread the word around” [3, p. 32].
There are examples in the reports of work with schools to raise awareness of dementia and intergenerational projects like The Archie Project, Big One’s Little One’s and Essex’s Intergenerational Age-friendly programme.
There is an example from Northern Ireland where people living with dementia can show a JAM card which flags to someone in a shop or wherever the person is engaging that they need a bit more patience. These are simple solutions that support people to live independently and feel supported.
A1Snehanjali’s case study in establishing assisted living in India demonstrates the wider positive impact and engagement with the community.
There are many examples where people living with dementia have been fully engaged in designing and implementing activities, approaches or solutions. This is critical and Dr Philip Ventry’s article on Aboriginal Australians demonstrates why this is so key.
Uganda and Botswana’s community engagement work is highlighted and how in Africa health promotion approaches are reducing stigma and the association between dementia and witchcraft.
There are inspiring people highlighted in the report such as Mrs Shefali Chaudhuri who the Alzheimer’s and Related Disorders Society of India (ARDSI) Calcutta Chapter support to live independently, at age 81, in her home.
For anyone involved in dementia not knowing where to start or what to do next, my advice is to read the “Dementia in the Commonwealth Report” and then start treasure mapping. We must encourage people to look outside organisational and statutory services and find the amazing people and activities that are happening in our neighbourhoods and build from there. Start building from what is already strong, then ask what more you can do to support those people and groups already involved, then consider what you can do in partnership with others. This is an important way to make clear what services need to be provided as part of universal access to healthcare for people living with dementia.
Public health palliative and end of life care is absolutely relevant to people living with dementia and the communities that surround them. The “Dementia in the Commonwealth Report” provides evidence and practical examples that demonstrate these connections. However, I also feel there are significant gaps and barriers to ensuring equitable access to public health palliative and end of life care that are very similar to those expressed in the report in relation to dementia.
At this stage I don’t know enough about the stigma or barriers within the Commonwealth of the association of dementia and palliative care.
However, this project has left me with questions I want to go and find the answers to, and a renewed passion for creating connections to ensure that people living with dementia and their families have socially, spiritually and culturally appropriate care at the end of their lives.
I am really grateful to everyone who shared their stories to create the richness of experience from which we can all learn.
The full report is available via www.commage.org
References
| [1] | A. Kellehear and J. Abel, The Oxford Textbook of Public Health Palliative Care, Oxford University Press , 2022. |
| [2] | Compassionate Communities UK, “Compassionate City Charter,” 09 July 2024. [Online]. Available: https://compassionate-communitiesuk.com/the-compassionate-city-charter-3/. |
| [3] | CommonAge, “Dementia in the Commonwealth,” CommonAge, 2024. |
[1] [1] The Commonwealth is a voluntary association of (56) independent and equal sovereign states, each responsible for its own policies, consulting and co-operating in the common interests of our peoples and in the promotion of international understanding and world peace and influencing international society to the benefit of all through the pursuit of common principles and values. (Commonwealth Charter)
Leave a Reply