Living with dementia as a younger person

In amongst the figures announced recently by the Alzheimer's Society on the scale and cost of dementia in the UK, the data on the numbers of younger people developing dementia was particularly notable. It is estimated that 42,325 people are now living with younger-onset (early-onset) dementia, a number considerably higher than previously thought. Given the problems younger people often have around obtaining a diagnosis it is probably safe to say that the actual figure could be even higher.

Dementia is traditionally associated with older people. That is the prevailing view amongst the general population, and in truth little has been done to dispel it. Occasionally there will be a newspaper or magazine article about an adult under 65 with dementia, and rarer still a child with dementia, but such coverage is often more sensationalist than really educational.

We know that dementia remains stigmatised generally, but if you are a younger person with dementia that stigma is likely to be far more significant. We know too that there aren't enough good quality, personalised and responsive post-diagnostic support services for people who are diagnosed with dementia - again, if you are a younger person that dearth of support is potentially even greater. 

It is well documented that carers of loved ones with dementia generally don't have anywhere near enough support to carry out their caring role. However, that situation can even more acute if your loved one is younger and your family is plunged into a completely different type of crisis around jobs, housing and the care of under-age children. It is also worth noting that dementia in younger people often progresses quicker than for older people. That isn't always the case, and many younger people live well with dementia for many years, but such wellbeing is usually in spite of rather than because of the level of support and care that they are offered from their local health and social care systems.

Issues around the progression of dementia are challenging enough, but adding in the potential requirement for residential care makes the picture even more complex. Many families find it difficult, if not impossible, to source a high quality care home that specialises in caring for younger people who are living with dementia. Mostly the only option is aged care, where a person in their 50's could be living with people in their 80's and 90's with very little in common in terms of hobbies and outlook.

Combine the factors of increased stigma, inadequate post-diagnostic support, challenges for family carers, likely progression of younger-onset dementia, and the lack of specialist residential care together and there is absolutely no doubt that if you are a younger person who is living with dementia you are facing numerous obstacles to living well. Even many of the therapeutic products that have been developed to help individuals who are living with dementia are based on reminiscence of eras that will mean little to younger people.

There are numerous societal pressures too. Because most individuals don't understand that younger people can develop dementia, if you are a younger person with dementia you face being disbelieved when you disclose your diagnosis. You may well become more isolated because friends of the same age cannot comprehend your diagnosis, and if you are working and find that your employment ends you can face huge financial pressures around paying your mortgage etc.

Your local services, if you have any, are generally aimed at older people (be they day centres, singing groups or dementia cafes), although there are some notable exceptions which I will cover at the end of this blog. Vital connections into peer support and international mentoring are often not made at the point of diagnosis, and so isolation is further compounded, added to by difficulties in travelling if your driving licence is taken away.

To say that the UK is badly failing younger people with dementia is something of an understatement. Why this group of people have been ignored for so long is, I suspect, due to that prevailing societal view that dementia only affects older people. If that is the case, then these latest figures should be a big wake-up call to our politicians and policy makers. Whilst specialist services may not be cheap, the cost of providing nothing is far greater, both for the health service and for every single family affected by younger-onset dementia.

Whilst the powers that be mull over that prospect, I couldn’t write a blog post about younger-onset dementia without mentioning some of the inspirational individuals and organisations who are leading the way for younger people with dementia. In their own way each challenges the stigma and discrimination faced by younger people with dementia, and together they form a powerful, collective voice. I hope that through them not only will society learn more about living with dementia generally, but that the particular needs of younger people living with dementia become better understood and more comprehensively addressed.

For anyone who is UK-based, there are a huge amount of resources on the Young Dementia UK website, including a regional breakdown of specialist support services for younger people who are living with dementia: http://www.youngdementiauk.org/support-across-uk. Young Dementia UK also have a list of blogs written by people who are living with younger-onset dementia, including Kate Swaffer and Chris Roberts, two very active campaigners for the rights of younger people who are living with dementia: http://www.youngdementiauk.org/blogs.

Although not exclusively working in the field of younger-onset dementia, I would also recommend checking out Dementia Alliance International, and the work of Norman McNamara, Innovations in Dementia and Dementia Mentors.

Until next time...

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