‘Younger people with dementia’ – an excellent guide from NHS Health Scotland

“Living well with dementia” is a simple aspiration, but represents a phenomenon of great importance and potential complexity in policy in both England and Scotland.

Thanks enormously to Kate Swaffer in Australia for bringing to my attention policy developments from Scotland, where I was indeed born in 1974.

A document ‘Younger people with dementia’ from NHS Health Scotland is an excellent overview of younger onset dementia.

It has been designed and informed by people with a diagnosis of younger onset dementia (dementia diagnosed under the age of 65) and their carers.

Its chapters include: What is dementia?; keeping well and connected; home; help; independence; getting around; work; money; support.

The chapters complement my book ‘Living well with dementia’ very well. Encouraging independence through assistive technologies and ambient assisted living technologies are an important aspect of our English policy too.

Every person with dementia, like every other person in society, is unique.

Their document doesn’t ‘talk at you’ – it respects people’s dignity, and encourages choice and control through personal autonomy.

Obviously care homes have their rôle later on, as they do for many of us; but this booklet is not about that. ‘Keeping well and connected’ touches on the very important tranche of policy which encourages any person, living with dementia or otherwise, being part of healthy social networks and communities.

Younger front cover

I felt this book was very clearly well laid, presented attractively.

It is a positive book, which is accurate in information and has a positive constructive approach.

“Getting a definite diagnosis can make it easier to get support and advice. You can start making decisions, find ways to manage some of the symptoms and discover how to live well with a diagnosis.”

“It’s not just older people who develop dementia. You may be reading this because you or someone you know have been diagnosed with dementia at a much younger age.”

“You may be feeling a range of emotions. Shock, disbelief and even relief can all be natural responses to a diagnosis of dementia.”

Furthermore, produced by NHS Health Scotland in partnership with Alzheimer Scotland and the Scottish Dementia Working Group, the ‘Younger people with dementia: living well with your diagnosis’ DVD is designed for the person who has just been diagnosed with younger onset dementia (dementia under the age of 65) and for the family and friends of the person diagnosed.

The DVD provides insights and information from younger people with dementia and their family carers about their journey to diagnosis and which resources are available to support living well with dementia. The DVD aims to provide information on:

  • helping people in the early stages of diagnosis to understand more about their illness
  • sharing experiences around how to ‘live well’ after a diagnosis of dementia, as well as offering practical advice on coping with its effects
  • suggesting where people with younger onset dementia, their families and carers can go for further support.

The YouTube video provides chapter 1 of this DVD.

I found this presentation very helpful. It shows people’s reactions to receiving a diagnosis. Many people describe their diagnosis as an ‘enormous relief’, but also touches on the practical difficulties in receiving an accurate diagnosis – particularly in the younger age group.

Certain dementias, such as frontotemporal dementias (including insidious changes in personality, language or language), vascular dementias, Lewy Body Dementia or alcohol dementias, are more common in the younger age group; yet Alzheimer’s disease, typified by memory problems, is very common too.

I think this point is much overlooked – that not all dementias are the same. There are in fact over a hundred types of dementia, and therefore “living well with dementia” is a particularly complex construct.

I strongly recommend the booklet and videos from NHS Health Scotland on younger people with dementia.

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