What is “Living well with dementia” all about?

My book is, I hope, a timely look at the idea of living well with dementia. There are, to my knowledge, few books which examine this issue which are intended for the general public. I hope the book is interesting and readable. To help, I have written this book in the style in which I blog. It’s been challenging to put together. It’s been very rewarding for me though.

This book is not about the medicine of dementia. There are specialist textbooks for that, including the diagnosis, investigations and management of the various conditions which might present to the clinician as a dementia. There are also plenty of clinicians who specialise in that. I have, however, introduced briefly how people with dementia might be identified in primary care, and the complexities of “the screening debate” which is currently so rampant in policy circles (see for example @DocMartin68). There is also a chapter on maintaining living well with dementia in end-of-life care.

I’ve had – necessarily –  to confront head-on some deeply entrenched misconceptions. There are indeed hundreds of different causes of a dementia, and yet dementia is erroneously considered by many in the media as a single entity. Politicians talk about a single cure. It is incredibly dispiriting to see this debate being led by some people who patently don’t know what they are talking about. Such factual errors can severely hamper the direction of the debate.

Particular types of dementia, however, tend to have particular “features”. For example, spatial navigation can be an issue quite early on early dementia of the Alzheimer type, social awareness can be an issue early on in the frontal dementias, and language can be an issue early on in some of the rarer dementias. As this is a particular research interest of mine, I have though tried to convey a flavour of some of the exciting developments which are taking place here from the world academic community. I feel that, with time, these discoveries will impact on helping people to live well with dementia. Another reason I’ve decided to talk about these findings is that these topics tend to be parked out of sight in specialist cognitive neurology journals which only certain people read. I believe strongly these findings should be widely published too.

Thankfully, there are quality standards published by National Institute for Clinical Excellence for dementia and specifically to support people well with dementia. At a time when ‘Health and Wellbeing Boards’ are supposed to be considering wellbeing in their commissioning decisions,  and at a time when dementia remains an important societal issue (though the exact prevalence of dementia may in fact be falling), I believe that it is imperative that people involved in healthcare have a clear idea what wellbeing is, why wellbeing is important for policy and the person overall, and how perhaps wellbeing might be measured for the dementias.

There is in fact a compelling socio-economic case for thinking about the impact of interventions on people with dementia and those interventions targeted at carers whose needs can often go unacknowledged. But if you’re genuinely interested in thinking the inherent positives of looking after our fellow citizens, the narrative is no longer one of “cost”, but becomes one of “value”.

Above all, my thesis argues for a person-centred care approach. This approach fundamentally values the person as an individual in the context of his friends or family, and considers his perspective and environment where care is organised. In other words, attention is given to the factors contributing towards wellbeing, not the neuropharmacological receptor make-up of a patient on whom a medication might act.

I’ve therefore intentionally tried to shift the entire language of talking about people with dementia away from sheer despair. There are chapters on activities, such as reminiscence storytelling (including life stories), dancing and gardening.

I personally have learnt a huge deal from people with dementia, who are no different from my other closest friends. A huge step in understanding someone’s beliefs, concerns or expectations is made when you put yourself in a person’s shoes, as Gill Phillips (@whoseshoes) has successfully encouraged. Communities of people living with dementia can be happy, as any Wednesday at the Healthy Living Club at Stockwell will amply demonstrate (@HLCLC).

Also it is easy to be lost in the mire of the quest for personalised drugs, but there is a huge amount that can be and should be done to offer practical help for or on behalf of people living with dementia. This includes independent advocacy and effective communication.

The external home, including individual rooms, and the ward environment can be designed optimally with the person living with dementia being of prime importance. A person-centred approach continues to be important for best practice in the design of built environments, but with different areas of emphasis such as inclusivity and “environmental supportiveness”.

One of the undeniable strengths of the #G8dementia summit was an imperative to improve dissemination of high quality information for care in dementia, as it is argued that this can lead to improved choice and control in personalised services. The “Dementia Challengers” website which Lee (@dragonmisery) has designed is no small achievement.

One of the major research challenges in the next decade will be think precisely how best to design assistive technologies based on the actual abilities of people living with dementia. Substantial progress has been made in this direction through a number of high-profile research projects such as INDEPENDENT and ENABLE. Such innovations, and those promoting telecare and ambient assisted living technologies, have indeed come from various diverse stakeholders, including the EU and the UK’s own “Design Council”.

The practical, and ethical, challenge will be how to encourage aims which at first blush might appear inherently contradictory, such as independence and social inclusion through extended networks  (see for example @shirleyayres), and this book touches upon this demanding debate. The success of innovations for dementia care will live or die through their ease of adoption in real life. One of the most pleasurable aspects of writing this book was to learn off various people on Twitter here (such as @helenbevan and @clarkmike). The ethical issues embue the whole argument and I’m grateful for @peterDLROW’s help in this regard.

There is a long and proud history of considering the needs of an individual living with dementia within the context of supportive communities. My book mentions a number of bodies both domestically and internationally, including the Joseph Rowntree Foundation and WHO, which have done excellent work on this.

This book can only provide a snapshot of living with dementia in English policy. I have tried to maintain an optimistic outlook, whilst being entirely realistic about the challenges this policy faces. The book is intended to spark a debate about where we might best target our efforts, but always puts in pole position the person living with dementia, and friends, families or carers. I hope very much people will read this with an open mind, and talk with one another about what they found exciting.

I know a number of people who are powerful advocates for those living with dementia (@NormanMcNamara and @KateSwaffer). They are all remarkable people and give so much of their personal time to raising awareness about the dementias. I also am lucky to know a few people who have lived and breathed looking after somebody close to them with dementia (@BethyB1886 and @tommynTour); one of them (@nursemaiden) has kindly written one of the Forewords. I sincerely hope that they would feel my book does their passion to this cause some justice.

Finally, I have had no “vested interests” in writing my thesis, so I hope you find it unbiased, balanced and accurate. If I have contributed just a small amount to one person living with dementia, I will feel my job will have been fulfilled. It’s just a snapshot of the field as it is now, but I dare say things will change. If you would like to be more involved with this book, there’s a twitter feed (@dementia_2014) and a Facebook page (co-managed by me and @KimSea2Shore).

Many thanks for your time.

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