This year’s World Alzheimer Report centres around the global landscape of post-diagnosis support and consists of case studies, shared experiences and expert essays, including ‘Living to the best of one’s ability’ from Keith Oliver and Lara Stembridge.
In the lead up to the publication of the World Alzheimer Report on 21 September, we are sharing excerpts of some of the report’s experts essays, with included additional introductions from the authors.
Keith writes: “It is widely accepted that having a diagnosis of dementia, if there is support to follow, should be without question a right for those directly affected. In my case, I am fortunate through my involvement and activist efforts to have the support of diligent, enthusiastic and very able psychology placement students, such as Lara – and it is an arrangement from whom we each learn so much.”
Diagnosis for me meant understanding the issues I confront and opened doors to whatever support and care was available. The best thing for me since being diagnosed with Alzheimer’s Disease on New Year’s Eve 2010, aged 55, has been the lovely, caring people I have met along my ‘journey’, as we share in this essay.
“As an ex-teacher, I’ve always understood the value of learning and since diagnosis, I have learnt an enormous amount, not just about dementia, of which I knew little before, but also about myself and the importance of remaining interdependent. Travelling through life now I do so more safely physically, emotionally and psychologically alongside others.”
Lara writes: “As someone travelling, albeit a short time with Keith, I have uncovered an entire world I was previously unaware of – one that has shown me the importance of connections and has taught me many lessons I will carry on through my life. During my placement supporting Keith and many other extraordinary people with dementia, it has become very clear to me that a diagnosis must not mean that people are written off as with support there is so much they can still achieve. It is definitely then possible to live well with dementia.”
Living to the best of one’s ability
Try as I will, the notion of “to the best of my ability” with dementia is both a target and a challenge which requires genuine person-centred support. In constructing this essay, I was fortunate to have the help of Lara, a placement student from the University of Kent, who this year is supporting my journey as I attempt to live with dementia to the best of my ability.
Although reticent to use the word journey, as it is an overused cliché, structured around David Denborough’s “Journey of Life”, I am going to describe my dementia journey since being diagnosed 11 years ago aged 55.
When embarking on this journey, I did so with no knowledge, some fear, lots of misunderstandings, misapprehensions, and little or no support beyond that of my wife travelling by my side.
Using my experience as a primary school headteacher/principal, I have always been a positive driven person, and I have continued with a sound moral compass, based on values, beliefs, and principles. I sought to read as much as I possibly could, using the maxim that information is power. Much that I read was not terribly positive, an exception being, ‘Dancing with Dementia’ by Christine Bryden, which put a spring in my step as I moved forward.
This has helped me when I reached crossroads along my journey and am unsure which way the pathway leads. Sometimes direction of travel is influenced by encroaching dark clouds or fog. I travel on foot as due to my dementia I no longer feel safe or stable on my much-loved bike and haven’t driven for some time.
My early diagnosis set me on this journey earlier than I wished but may well have helped me in developing my coping strategies to enable me to travel as safely as possible. Some days when the metaphoric sun shines, travelling is easier. There are days when I am able to engage with activities and people from whom I feel I take more than I give. Other days the road seems to climb a steep gradient, and that one hilltop merely leads to another, tantalisingly stretching before me.
What would have helped me starting the journey, would have been a clear map or a care plan to support my efforts to live to the best of one’s ability.
My care plan took me four years to achieve and fifteen minutes to write in a consultation appointment with my consultant psychiatrist who, as it happens, I taught for two years in primary school. I cared for him on his journey, now he cares for me on mine.
Using the metaphor of milestones and favourite places on the journey, my care plan identifies what activities I find most helpful, amongst which are my roles as an Alzheimer’s Society Ambassador and Kent & Medway NHS & Social Care Partnership Trust (KMPT) Dementia Envoy, plus the resilience I derive from creative activities such as poetry and painting. Alongside this, supportive friendships are crucial for my well-being. All this works just as well as the galantamine and memantine that are also in my survival kit.
Support from friends or professionals is not always available as I march on ahead, and I have difficult days when the only person alongside me is my wife, and she clearly sees the real impact dementia has upon me when words evade me; when I cannot judge the safe two metre spacing; when what she has told me a number of times has failed to register; when the TV programme we both watched and enjoyed has left my memory so we cannot share a conversation about it; or when the roses which enhance our route are scented to her, but lack scent to me.
But dementia will always fail to damage our love and what we seek to achieve together. A small number of onlookers, ignorant of what living with dementia is like for me, stand along the wayside, questioning my journey.
There is no one size fits all and there is no one typical person with dementia. Each person travelling with dementia is unique. Understanding this helps us all as we continue along the pathway.