For many of us dementia is an issue relating to older people.  Something we are seeing in our older relatives perhaps, being concerned about what the future brings, the questions around nursing homes and all the stereotypical images this conjures up. 

This blog aims to reposition this, I believe, outdated notion, and demonstrate why it’s an issue for everyone and particularly for young people.

I do not mean to minimise the role and contribution of older people; they and their carers are of course the experts.  It is critical that the human rights of older people are protected, and that society values their personhood, improves their experiences of living with dementia and increases their engagement in solutions.  However, we need younger people to lean into this global challenge.

Several years ago, I spent some time considering the relationship between UK hospices and dementia, and at that time started to understand more about good design principles, dementia friendly spaces, reminiscence and personalised care planning.  My current role in public health palliative care, combined with freelance assignments has again merged these areas of interest.

I have recently had the privilege of working with CommonAge, a Commonwealth[1] charity whose purpose is to work for Commonwealth citizens of all ages, but with particular emphasis on the interests of older persons, working for a truly inclusive, all-age-friendly Commonwealth in which no section of society is marginalised on account of age [1].

The publication of their ‘Dementia in the Commonwealth’ report pulls together essays from twenty-six people or teams involved in improving the lives of people living with dementia.  The stories are full of inspiring individuals, wide-ranging solutions, examples of community engagement, intergenerational programmes, examples of the importance of design and the many challenges associated with the disease [2].  Many of the challenges are relevant across the Commonwealth including the issue of equity, access to culturally and socially appropriate support, an insufficient labour market and funding challenges.

What I hadn’t expected from this assignment was that the context of dementia would be completely repositioned in my mind. 

Prevention

Nearly 40% of dementia’s are preventable with the risk of developing the disease starting decades before any symptoms emerge [2, p. 20].  The window of prevention is whilst we are younger, with research indicating that the risks include childhood trauma, poverty, poor mental health, poor lifestyle choices and loneliness [2].  I’m fortunate that most of those risks don’t apply to me, however, on some issues around diet, exercise and mindfulness I could have done better, and it may well be too late!  I wish I’d known in my 30s that many forms of dementia are preventable by the lifestyle choices I make.

Education around healthy lifestyles and chronic disease including dementia must start in primary school, including with parents, and continue as a lifelong message.  I’m now far more focused on reducing processed food for my household and encouraging healthy habits.

Dementia is not necessarily an inevitable part of ageing or a ‘luck of the draw’ condition.  We can make changes that can reduce the risk, but we have to do this in our earlier decades.

Childhood Dementia

I was aware of ‘young onset’ dementia, however until working on the ‘Dementia in the Commonwealth’ report I had absolutely no idea that 1 in every 2,900 babies born will develop childhood dementia, half dying before the age of 10 and 71% before the age of 18.   The estimated figure for the UK is that there are 204 deaths per year from childhood dementia and 260 for childhood cancers [3, p. 17].  If anyone had asked me to guess that statistic, from the media coverage and national charities supporting childhood cancers, I’d have estimated a huge difference in the numbers.  I was chatting today with someone who has two children with dementia, we talked about how there isn’t a word for parents who have had a child die, not like we talk about widows or widowers and that there is no phrase for a parent’s experience of grief in the context of a child who won’t live a long life into adulthood…the living grief she described.  We must do better as a society. Childhood dementia needs to be highlighted and supported equitably.

The labour market – we need young people to value a role in care as a career choice

There is a global care workforce crisis, and this is reflected across the Commonwealth.  I remember many years ago when working in the National Health Service (NHS), maybe 2005/2006, where the size of the problem with regards to an ageing workforce was flagged as part of future NHS planning, and this excluded social care where the challenge is more significant.  Successive governments have failed to address this issue and find a solution that grows our labour market and retains staff in a sustainable way.   These issues are global and the UK recruiting overseas workers from nations that have their own workforce challenges feels, to me, morally questionable.

“There is no incentive to work in the elder care sector because the work can be challenging and there are limited growth prospects. There are many opportunities for young people in shopping malls and call centres which they find preferable, often paying more money than care for less challenging work” [2, p. 45]

The above quote relates to India, however, could easily be applied to the UK.  We need to significantly increase the value of care jobs and work together across the Commonwealth to try and solve this problem.  It will take the collective of diverse thoughts, opinions and solutions to have any chance of a sustainable resolution for all nations.

We must urgently reframe jobs in care to make it an attractive and long-term career choice for millions of young people.

Young people need to be part of designing the solution.

Women and girls

The other significant reason we must solve the labour market crisis is the impact of dementia on women.

As a woman, a mother of a daughter very interested in social justice, a daughter, sister and aunt, I was outraged to read the facts and figures in Datin Jacqueline Wong’s article in Appendix 1 of the Dementia in the Commonwealth report [2].

Of the 82 billion hours annually of informal care that are provided to people with dementia at home, 71% are undertaken by women [2, p. 15].  I do fundamentally believe that family should, where possible, take care of its own as much as it can, in partnership with community and services, however the disproportionate reliance on women to do this is wrong.  This leads to women not being able to achieve gender equity in the workplace and all that this means for their lives.

Women are taking the lion’s share of work for a failing global workforce plan.

Older women are discriminated against because of their age, gender, condition and role as carer and, or, if diagnosed with dementia.  Extreme discrimination can lead to women with dementia facing neglect, abuse and even violence”. These negative and discriminatory experiences of women is an infringement of their human rights” [2, p. 40]

This is not the future I want for my loved ones; young women need to lean in now and act for their future alongside all other women… and men!

Social Entrepreneurs

There are stories of young people who have, due to personal experience, found a way to get involved, developing solutions and support for people living with dementia.  Their stories are summarised in Rianna Patterson’s report  [4].  For example, Charlie Blair who founded the Blair Academy following his grandmother’s experience of living with dementia, now employs 14 young people and runs hip hop sessions for older people.   Lizzie English founded Women in Neuroscience, now a volunteer network of over 40 people. Both of her grandmothers died with dementia, and she is advocating for individual led initiatives and raising the profile of dementia.  Other inspiring stories include Comfort Mwanza, who founded “Youth Changing the Mindset” in Zambia and Roberta Adutwumwaah Ntem, who founded the “Good Old Age Golden Foundation” in Ghana and Rianna Patterson herself who founded the youth led “Dominica Dementia Foundation” at age 18.

These young people, understanding life with dementia through the experiences of their loved ones, have key insights, creativity and ideas.  We must listen to them and not dismiss them because of their age.

Summary

Young people are critical to the future for persons living with dementia.  Through greater understanding of prevention and the importance of healthy lifestyles we can reduce the number of people living with the disease for future generations.  Young people are key to designing new roles and new ways of working that are attractive to build an effective global workforce.  Young women, I hope, will challenge the stereotypical role and disproportionate expectation on their shoulders when it comes to informal care.  Recognising, of course, that this is individual choice and there should be no stigma against women who do choose to take time out to care for their loved ones.  We need to understand more about the impact of childhood dementia, to raise it’s profile and ensure that policies are across all age ranges and all people.

Dementia is not an issue for older people alone, it is an issue for everyone including the young.

References

[1]	CommonAge, [Online]. Available: http://www.commage.org. [Accessed 1 August 2024].
[2]	CommonAge, “Dementia in the Commonwealth,” CommonAge, 2024.
[3]	Childhood Dementia Initiative, “Childhood dementia and the urgent need for policy inclusion,” Dementia in the Commonwealth, p. Appendix 1 Page 17, 2024.
[4]	R. Patterson, “Young People and Dementia,” Dementia in the Commonwealth, p. Appendix 1 page 20, September 2024.

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[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)