Shirley Nurock: Join me and take action
Shirley recalls her experience of caring for someone with dementia and how you can take action on research.
My husband, a GP here in London, was in his 50’s when he developed symptoms of Alzheimer’s Disease, our 3 children then in their ‘teens. Yes he had been more than usually forgetful over the last year or so, but he assured me it was anxiety due to the new management practices being imposed on GP’s and worries about his inability to understand computerization. That he was a very brilliant man, coupled with excellent social skills, probably served to mask, even to me, just how impaired was his brain function so when the diagnosis came it was something of a shock to us both.
I can only say our lives were turned upside down as we embarked on what turned out to be a 15-year journey through AD. The impact on him, on me, the children and the wider family was, and still is, devastating, its legacy affecting all aspects of our lives - social, physical, mental and financial.
It was the isolation that I found hardest to deal with – friends, including medical friends, disappeared. Neighbours quietly crossed the road when they saw us coming…. Why, were they afraid it was contagious or just didn’t know what to say? Yet we longed for company. Unable to carry on my part- time job, or pursue hobbies, in my 40’s as I then was, my life was on hold. The children, particularly the youngest, our son, went through his secondary school years consumed with embarrassment, unable to see the humorous side to any of the mishaps that occurred when we were all together or on family outings and, although never spoken, probably even then at the back of their minds…. Is this hereditary?
All those years ago the word Alzheimer’s was not in common parlance and there was little general awareness of the condition most called senile dementia. Like many carers of someone with dementia I was totally unprepared for the challenges that lay ahead, the ethical dilemmas I would face over the years whilst trying to access suitable support to ensure my husband enjoyed as good a quality of life and well-being as possible. And at the same time trying to listen and guide our children through their turbulent years over choices of schools, universities, careers, and ultimately partners.
I sometimes think I failed on all counts. I felt tremendous sadness and pity for my husband. Relatively young and fit as he was, with no other medical conditions, it is truly shocking to witness the slow disintegration of someone you love. So worn out was I fighting to make my voice heard in the endless battle for services to catch up with need, I had little energy left to be a good mother.
His last years were in a care home which opened up a whole new world to me – not of Relief as I had been told to expect once the awful decision to move was made, but of Incredulity at the lack of compassion, and poor quality of life provided for residents. Perhaps that is why I spent hours every day with him trying to compensate for what was missing …… The main difference being that I was able to go home each evening and have an undisturbed night’s sleep. I still visit the place occasionally and although there are improvements it still suffers from the usual problems of staff shortages, too many agency staff, high staff turnover.
I remember at the time of diagnosis asking the neurologist at The National whether my husband’s young onset dementia could be hereditary and was told probably not, but anyway not to worry as there would be some kind of cure or symptom relief available by the time the children grew up. Here we are over 20 years later, our children are on the threshold of middle age, parents themselves, and there is still No cure, No meaningful symptom relief. Where is it?
Through my involvement with the Alzheimer’s Society Research Network and the programme of Research it funds, I know that scientists now have far greater understanding of the dementias at a molecular and cellular level and more recently strides have been made in the field of genetics, but how to link these up to translate into drug interventions that will enable families to live well with dementia, that they shouldn’t have to go through the trauma they do now and place such enormous strains on healthcare services.
In the area of social care research there have been many studies funded that aim to set standards of good care to optimize quality of life….. Person-centred care, Psychological interventions and Best practice management in care homes. We understand far better how to look after patients, but it doesn’t come cheap. In the current economic climate and budget cuts there often seems to be little Will or incentive to implement the proven outcomes of some very good research with all the resources it requires in the way of staff recruitment, staff training and ongoing supervision. This has to change, it has to be rolled out to ALL care homes, to all care settings regardless of how it is funded.
You know the predictions of incidence of dementia in the next ten or twenty years – they are truly horrendous and if you think the NHS and social care services are struggling now, it is surely nothing compared to what is to come….
It is vital that funding be made available now to enable a huge push in the research to find, within the next 15-20 years - because that’s how long it takes to develop a new drug treatment - I don’t suppose it will be an out and-out cure, but drugs to arrest symptoms before they adversely affect quality of life, or, better still, prevention in those groups known to be at risk. Nothing Less will ease the burden on individuals and society.
It is vital too that policy-makers and commissioners encourage Trusts, hospitals, clinicians, GPs, care home staff, the regulators and ethics committees to be more proactive in recognizing the value of people with dementia and their carers participating in research and clinical trials…. Even that they sign up for brain donation. Involvement in clinical trials may come too late to help those already diagnosed but the act of participating invariably results in an improvement in well-being plus the knowledge that the results will one day benefit their children and grandchildren.
We are surrounded by people with dementia at a societal level. Nearly everyone you talk to knows someone with dementia, it is the most feared condition of ageing simply because it is the one condition with absolutely NO HOPE. Hearing that there are currently 10 times more Phase 1 and Phase 2 trials underway for heart disease than dementia and 60 times more for cancer than dementia is hardly encouraging for us.
I am surrounded at a Personal level too, as, a carer again, I have responsibility for my parents, my father will be 102 next month, both are confused but still in their own flat with a live-in carer; and my father’s 98- year old sister in the same condition. It is a nightmare. An expensive nightmare at that. Yes, I am aware that there is now far better awareness of dementia and what constitutes good care but Living Well with Dementia is still an aspiration. Now we need the scientists and pharmaceutical industry to make it happen.
SPEECH FROM: “Year of action on dementia conference”, Thursday 14th March 11 a.m. – 2 p.m.