REPORT REVEALS FINDINGS ON DEMENTIA IN THE COMMONWEALTH

CommonAge, the Commonwealth Association for the Ageing, launched its Dementia in the Commonwealth report on Friday 6th September at the International dementia conference in Sydney, Australia. 

Believed to be the first report on dementia focussing on Commonwealth countries, the publication delves into the current state of dementia care and support; it highlights disparities and challenges, best practices, and the urgent need for action to improve the lives of those affected by dementia. Alzheimer’s Disease International estimates by 2050, there will be 139 million people living with dementia, with the greatest increases in low- and middle-income countries. Dr Emma Hodges, Report Project Manager, chief editor and author said there is a new case of dementia somewhere in the world every 3 seconds.

With 2.5 billion people across the Commonwealth, it makes up over 33% of the global population. The 56 Commonwealth countries are among the World’s biggest, smallest, richest and poorest countries; there are 21 Commonwealth countries in Africa, 8 in Asia, 13 in the Caribbean and Americas, 3 in Europe, 11 in Pacific. 

The report, which involved research and collaboration with experts, people living with dementia, healthcare providers, and carers from across the Commonwealth, also showcases successful models of care from across the Commonwealth that can serve as templates for improvement. 

HammondCare Dementia Centre General Manager Angela Raguz says the report is a significant opportunity for the Commonwealth to share the expertise and resources that exist to improve the lives of people with dementia and their carers and added, “As the Commonwealth turns 75 years of age, this report challenges us to consider the realities for its citizens in their 70s with dementia. I am looking forward to the opportunities for The Dementia Centre to collaborate with the many contributors to this report across the Commonwealth.”

Key findings include:

• 59% of Commonwealth nations do not yet have a National Dementia Plan (NDP) or strategy in place.
• Only 11% of Commonwealth nations have a NDP in place.
• 19% of Commonwealth nations are in the process of developing a NDP.
• Shared challenges across the Commonwealth include the need to deal with the inequities in access to support, the workforce shortage and a requirement for a funding strategy.
• Communities and civil society are mobilising to create greater awareness and dementia friendly spaces to reduce isolation and discrimination. 
• Health and care professionals are working in partnership with other key stakeholders to find new ways of providing culturally appropriate care and support. 
• Entrepreneurs from private and social sector, and committed enterprising individuals are also seeking solutions across key areas such as housing, residential care and technology.

 

Report project case study – New Zealand (Page 143)

The Spark of Life Model of Care (Spark of Life), is currently implemented on five continents and offers governments and international healthcare providers in the Commonwealth countries, a cost-effective best practice resource to address the challenges in dementia care and solve the key issues. In particular, the model equips leaders in diverse dementia services and cultures with ‘evidence based, culturally appropriate and human rights-orientated’ education that they can deliver to their teams so they can provide integrated person-centred care. The model is sustained through having healthcare leaders in each service educated and certified as Master Practitioners. These leaders are provided with specialised dementia education that can not only be used to educate their staff but also the wider community.

 

Adriel House and Rest Home are two dementia specific homes, situated in a rural farming community, 40 kilometres north of Christchurch, New Zealand, each with 21 residents. Spark of Life was chosen as it includes specialised education, with tools that enable this information to be passed on to every staff member in the facility, as well as a self-evaluation guide that supports continuous improvement as best practice. Meaningful activities based on the Spark of Life philosophy are provided for residents which give them purpose, motivation, opportunity for reminiscing and boost their self-esteem. Residents now have a reason to get out of bed in the morning. Because of this, for the last 10 years, the care homes have not required the use of personal or physical restraint. In addition, fall rates have decreased. Due to the welcoming, inclusive and understanding atmosphere created by all staff, new residents feel at home and settle in quickly. Staff have shifted to a rehabilitation mindset and residents remain independent for longer with their quality of life improved. The doors to the garden are open for residents to walk freely in and out and they are encouraged to collect the paper from the mailbox, pick flowers from the garden, feed the numerous animals, weed and water plants and vegetables. Staff are empowered and their self-esteem and confidence in their job has improved. 

 

Report case study – Calcutta (Page 115)

For the last two decades, Alzheimer’s and Related Disorders Society of India (ARDSI) Calcutta Chapter has been working throughout West Bengal by organising a memory screening clinic, offering counselling services whenever required, and organising dementia training and awareness workshops. The organisation has a day care centre in Kolkata and offers a home companionship service for families. Regular carer support meetings are organised both online and offline. 

 

In the 2022-2023 financial year, about 25 awareness programmes were conducted in clubs, schools, colleges, in government offices, consulates, hospitals and social organizations. Some of these awareness programmes were held in various institutions and organisations. ARDSI Calcutta Chapter has been looking to reach out to the younger members of the society so that they would be tuned sensitively to the cause and spread the word around. ARDSI Calcutta Chapter has a social media presence and posts details of its events and various activities and some of its awareness sessions now take place online.

 

An interview with Dr Emma Hodges

 

To find out more about the report’s findings and what this means for the UK care sector and public, Freelance Consultant Olivia Hubbard, from the Alzheimer’s and Dementia Show, conducted an exclusive interview with Dr Emma Hodges, who works as a Report Project Manager and Chief Editor. 

 

Q: What should the UK National plan for dementia look like?

 

Dr Emma Hodges: There are a number of issues on why it’s taken so long for plans to be in place. I think for some countries, clearly, there is so much going on and if you’re worried about conflict, climate change, poverty, then perhaps dementia isn’t top of the list when it comes to it being a public health crisis. 

One of the things we were careful about, and what we didn’t want to do, was for the report to name and shame countries. I think we have to accept that it is quite complex and there is a lot of things that need to be taken into account when it comes to developing a plan for dementia. 

What became really clear when developing the report is where there isn’t a government plan in place, there are still lots of great things happening. There’s a real message of hope and optimism in the report because there are just amazing things happening out there in communities across the commonwealth. For example, Young people who have set up their own organisations because they have had experience of seeing their grandparent with dementia. There is something that everyone can do. 

 

Q: What would be your message to the UK Government on producing a strategy for dementia?

 

Dr Emma Hodges: There seems to be a real focus on healthy ageing. I think it will be interesting to find out if the change of government does prompt a refresh in where the dementia national plan needs to sit because the problem with aligning It with healthy ageing is that it doesn’t take into account childhood dementia or early onset dementia. It needs to be woven into the complete picture for health and social care, it needs to be a strand that continues. 

Dementia is a public health priority. I hope the government speaks to families and builds the plan from the ground up and takes note of the amazing work that is happening, such as the dementia friendly communities. We need to mobilise the COVID spirit for community for dementia and ensure that the structural systems are supported. 

 

Q: What needs to be considered in relation to dementia design?

 

Dr Emma Hodges:  There is a lot that we can learn from Australia in terms of design and how we look at adaptations in the home, as well as in care settings. We need this to be in the public domain. We need to have really accessible guides for families and carers that help people to balance that risk to enable people to live their best life. For example, taking doors off hinges in case people forget what’s behind them, or tips for being out and about. There is a huge role around public education. The issues, ideas, and solutions are all out there, we need a public education programme that pulls on some of the best examples and thoughts from across the globe. 

 

Q: How can the UK resolve challenges in relation to dementia care?

 

Dr Emma Hodges: For the NHS and the UK, we are at a really difficult time. The NHS is incredibly stretched. Charitable funding is more competitive and harder to get. I think some of the challenges are around how do we equip communities to have more confidence to support each other, compassionate communities and what people can be doing on the ground. I think these messages are really important. It’s difficult to imagine how we are going to resolve the challenge around caring for people living with dementia unless we have a functioning healthcare system, a functioning social care system, and a functioning hospice system and all three are creaking at the seams. 

 

Q: Are you able to tell us more about the prevention of dementia?

 

Dr Emma Hodges: Dementia is an all age, life course event. We have also got to consider childhood dementia. We need to get a better understanding of dementia, reducing some of the stigma and encourage people to talk about it more openly in communities. We can prevent 40% of all dementia through lifestyle changes, so we need young people to understand that the decisions they are making in their 20s, 30s, 40s, may be impacting their chances of getting dementia. We have to get the prevention messages right, we have to get the diagnostic messages right, post diagnostics support, and we need to get the ability for people to live their best life right until the very end.

It’s about everybody working together, our businesses, our open spaces etc. Dementia is everybody’s business. Dementia is going to affect everybody. 

 

Q: How would you summarise the progress that’s been made in relation to combatting the stigma associated with dementia?

 

Dr Emma Hodges:  I think progress has been made and I think some of the campaigns have been really helpful. One of the things that was quite shocking in the report was that in parts of Africa, dementia is seen as witchcraft. There is still a massive lack of acceptance of dementia as a condition. That was a huge shock, I hadn’t heard of that before. I’m not confident that there is nowhere in Britain that there isn’t the stigma we would see in some African communities. We have to ensure that we are reaching out to all communities and having honest conversations about living with dementia. 

 

Q: What does the report tell us about equity?

 

Dr Emma Hodges: The issue of equity is one of the core strands in the global plan for dementia. I would say nowhere in the commonwealth has got this right. We shouldn’t assume that equity is an issue in just some parts of the commonwealth and not in others.  

 

There are some commonwealth wide challenges, equity is one, and workforce is another. We know we are doing overseas recruitment, but what we are doing is recruiting from other countries who need a care workforce so what we need is a Commonwealth wide approach to growing the labour market. In the UK, we need people to see care as a valued career prospect. 

 

We need to come together and have the conversations and see what we can learn. Some of the technology in Australia with aboriginal Australians is all about co-production and we need to be doing something meaningful. On the issue of equity, with baby boomers, some people living with dementia are forgetting that they have had conversion therapy, they are reliving the fear of being found out because being gay was illegal in their lifetime. We have all of these experiences, people forgetting these life experiences. There is a lot we need to do to move away from medical models and we need to ensure that we really are getting to know people that are being care for to ensure their uniqueness. We need to get to know their family, the things that matter most to them are really at the heart of the conversations being had. We need to ensure we have social connectedness, so people feel safe and feel belonging.  

 

It’s important the carers and family have the time and space to care for a loved one, I do believe in the importance of family members leaning in. it would be good to have flexibility written in to the policies, to allow more shared support from family and friends. 

 

Q: The report shares insights into childhood dementia, why has childhood dementia not been widely reported in the UK?

 

Dr Emma Hodges: The childhood dementia initiative was formed in Australia and the message is getting out more widely. 1 in 2,900 children will have dementia and the morbidity associated with dementia is really high, the numbers of children with cancer in comparison to dementia is not that different. Scotland has recognised childhood dementia in its dementia plan. We would urge the UK Government, English and Welsh governments, to look into the impact of childhood dementia on families. 

 

Some of the neurological conditions that children have, also have the symptoms of dementia alongside them. It’s symptoms in the context of other diseases that the child may have. I spoke to a lady who has two teenage children with dementia and she says there is no support. For childhood dementia, the area we need to understand is the role of children’s hospices. Is the staffing model there? Is the resource there? Family support is crucial for life limiting illnesses. I would like to see some time and energy put into a research paper that looks at the challenges of childhood dementia in a UK context with involvement of families, to ensure they are getting the appropriate care and support that the need. 

Dr Emma Hodges concludes: We are exceedingly grateful to partners, sponsors and collaborators for their generous support in this publication together, we can work towards a future where individuals living with dementia receive the care, respect, and support they deserve.

 

Visit the CommonAge website to download the report in full.