Quality Of Life In Dementia

Reinhard Guss

In over thirty years of working clinically with people who have a dementia, I have seen a great deal of change for the better, and over recent years increasing evidence that a good quality of life is possible for many years despite a dementia diagnosis. While services in the UK, and indeed worldwide are patchy when it comes to supporting people with a dementia, information available online has proliferated, and is now widespread and of excellent quality, although so far not used to its full potential.

Dementia is the umbrella term for dozens of diseases that affect the brain, leading to difficulty with a range of thinking skills and brain functions, with Alzheimer’s disease and its associated memory difficulties being the most well-known and frequent dementia. In past generations, it was associated with mental health problems and tarred with the same stigma, which reverberates today in the fact that it remains the most feared health condition in the over-50s. Public perception and representation in the media are often still characterised by images of inexorable decline, helplessness and the need for full-time care in the very late stages of the condition.

However, we now know that most forms of dementia progress much more slowly than previously thought and that there are a multitude of non-drug approaches that slow down the progression and improve quality of life, there are now many examples of people who are continuing to live full and active lives well over a decade after their initial dementia diagnosis. In today’s article, I want to give you an overview of these “psychosocial interventions”, and in future ones, I will discuss some of the approaches in more depth and introduce you to the stories and work of some of the pioneers of “dementia engagement and empowerment”, people who are living with a dementia and contributing to information, literature, research and innovation.
As the Dementia Lead of the British Psychological Society (BPS) in 2014, I led a working group that produced the first edition of the “Guide to Psychosocial Interventions in the Early Stages of Dementia”, and we updated this last year. You can download it free from the BPS website at this link: https://explore.bps.org.uk/content/report-guideline/bpsrep.2014.rep101c

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The first edition of this guide was a great example of collaboration with people with dementia. I was working on guidance for professionals and held consultations with people living with dementia in Kent, Birmingham, Glasgow, and Belfast, who attended groups affiliated to the Dementia Engagement and Empowerment Project (DEEP). We wanted to know what people thought about the uses of Psychology in the dementia care pathway, including psychological interventions after a dementia diagnosis. In the course of these meetings, people living with dementia were often surprised to learn just how many approaches and interventions there are that can be helpful when trying to live as well as possible with dementia. People told us that they would like a catalogue, where they could look up, compare, and choose interventions, and we subsequently compiled the first guide.

From feedback since its publication, we have learned that it has been useful not only for people with a dementia diagnosis, their families and friends but also for professionals, dementia advisors, commissioners of services and policymakers. In recent years there has been rapid development of interventions and of research into the effectiveness of psychological and psychosocial interventions in dementia. While the first edition contained 24 separate entries, the current edition therefore includes 36 entries to reflect this growth. For example, arts-based and creative interventions have been researched increasingly, and we have therefore created separate entries.

The influence and advice of people who have dementia is evident throughout this “catalogue”. For example, there are two content pages: one to find interventions alphabetically, and another where interventions are grouped together according to what people are most interested in, such as adjusting to the diagnosis, managing stress or depression, improving or maintaining cognitive functioning or support for families and carers. While each of the interventions has got research evidence of its effectiveness, we kept the academic references to three key ones in each entry and added which organisations are recommending these and where you might find out more about them.

We kept each entry to two pages and in a format that allows comparisons to be made. While all are available somewhere in the UK, unfortunately, provision is patchy, and what is available continues to change. One advantage of information from this guide is that people can ask their GPs or contracted services for what they might want, leading to better provision in the future.

If you are living with dementia or supporting someone with a diagnosis, I would encourage you to have a look, browse its pages, and discover some of the latest non-medical treatments that improve quality of life and help to maintain independence for much longer than was thought possible even ten years ago.

Reinhard Guss, Consultant Clinical Psychologist, Clinical Neuropsychologist