This blog article is a blended piece, combining two companion articles from Paul Bebbington and Elizabeth Kuipers, two academics who spent their careers researching and writing about mental health and care, respectively, and whose lives are now impacted by Paul’s diagnosis of Alzheimer’s. These two counterpart pieces offer brave accounts of the day-to-day experiences of living with dementia and being a care provider.
In an initiative to reduce stigma, they speak of the challenges, the changes and the importance of maintaining a good relationship. Together, they speak of losing and catching the threads from the tapestry of their lives together, and of their individual selves.
“As a psychiatrist with an interest in phenomenology, I thought readers might be interested in a personal account of the experience of dementia. In addition, given the community and professional response to dementia, I also hope this might make a small contribution to the process of de-stigmatisation.
Some medical problems preceded the development of my cognitive difficulties. I have had moderate hypertension for over 20 years, treated with antihypertensive medication. I think I first noticed cognitive difficulties after episodes of paroxysmal atrial fibrillation. After each treatment I noticed my ability to remember things was, and remained, appreciably reduced.”
Over the past few years my memory has worsened considerably. I have to work harder to remember things that I want to remember, and even then it quite often does not work. Indeed, if I do not concentrate hard, things are occasionally wiped in seconds.
The impact on my personal life has clear emotional components – obviously I do not like the idea of being unreliable, or of being an inevitable burden to my family, particularly my wife Elizabeth.”
“I am in the interesting position of having published research into caregiving for more than 40 years, and now needing to put it into practice.
The first signs of Paul having trouble, about 6 years ago, were relatively slight and not different from issues many friends and relatives have – misplacing keys, leaving travel cards at home. Irritating, but not very serious, and solved mainly by suggesting a ‘man bag’ with a shoulder strap.
Later on, it became clear that some of the abstraction and conceptualising was more difficult. I could not suddenly change topic [in conversation], and the usual shorthand for conversations between the married was not so easy. I had to be much more precise.
“I often forget which cupboard to put something in, and unwisely try to compensate by thinking where might be a reasonable option. This is rarely useful. I sometimes do not register what I am told about events (even significant ones) experienced by other people, which can be socially embarrassing.”
This is partly an attentional problem: my attention does stray if it is not riveted, and I have to work quite hard to keep focused. Part of the problem is motivational – I sometimes cannot be bothered to deploy the increased energy that I need in order to focus. I sometimes do not finish books even though I initially found them interesting.”
“Predicting what needs to be compensated for, without being overbearing, is another new requirement – a balance between stepping in and allowing for a few missteps. As carers have always told us, the role is not for the fainthearted and not easy to get anywhere near right.”
carers have always told us, the role is not for the fainthearted and not easy to get anywhere near right.
“I can still do the difficult sudokus the hard way quickly and (usually) correctly. I find intellectual effort more difficult, although there is some specificity to this. I find it too difficult to do the heavy lifting of formulating and structuring a scientific paper, which I have now given up entirely.
I found that I needed to rehearse in detail talks that I had previously presented routinely on teaching courses. As a result, I have now completely stopped presenting papers and lecturing: even after considerable effort and practice I could not rely on getting the sequencing right”
“He is basically fine, not entirely fine, sad that things are more difficult for us both and not wishing to make things worse. Of course. But P also looks good, has fun socially, enjoys my cooking, lifts weights at the gym and still knows far better than most of us what all the capital cities are called.
He has considerable cognitive reserve, and knows and remembers many things, but there are now holes in the tapestry at unexpected moments.”
“I also notice that I am more emotionally labile – I sometimes feel near to tears when I hear something touching, in a way that is new. I am still prone to disbelieve people who correct me, and sometimes become irritable or even angry, despite being aware of my difficulties (I am working on this!).”
“I had always, when asked, said to carers that they should never give up the day job – never make caregiving your only role in life. This is well evidenced as reducing perspective and being depressogenic. I had begun to slip into this – It was only when I could not stop crying that it became clear that giving up my own interests was just narrowing my life.”
The research is also clear about the importance of a good relationship. We try to have fun and laugh about some of the absurdities. We do something memorable each week – art galleries, films, lunches with friends, weekends away.
From the literature, particularly in psychosis, caregivers tell us that they need practical and emotional support and for the person they care for to get better – iIt is always a challenge to change roles, from clinical academic to someone with lived experience. We have a very supportive blended family, lovely friends, neighbours and work colleagues, and it has been very helpful of P to be so open and publish about his diagnosis, so there are no secrets there either.”
“A recommendation – I have discovered that by being open about my diagnosis I have received enormous support and affection from family, colleagues and friends.”
I have discovered that by being open about my diagnosis I have received enormous support and affection from family, colleagues and friends
This post has been developed from extracts written for the British Journal of Psychiatry, with the author’s permission. ADI would like to thank Elizabeth and Paul for their agreement to share their writings with our readership. We believe their story and experiences will help to pave the way to reducing stigma around Alzheimer’s disease and other forms of dementia.
In 2019, ADI compiled our annual World Alzheimer Report: Attitudes to dementia. That gave in-depth global insights into stigma around the condition, and was compiled from 70,000 survey correspondents from over 155 countries.
- Elizabeth Kuipers, OBE, BSc, MSc, PhD, C. Psychol, FBPsS, FAcSS, NIHR SI Emerita, Professor Emerita of Clinical Psychology, Department of Psychology, School of Mental Sciences, Institute of Psychiatry, Psychology & Neuroscience, King’s College, London, UK.
- Paul Bebbington, PhD, FRCP, FRCPsych, Emeritus Professor, Epidemiological Psychiatry, University College London, UK