Working with dementia Francine Beadsworth explores the ethics of working with clients with a dementia diagnosis
B oth my parents, now and Alzheimer’s. At the time of those diagnoses, in the absence of MRIs, I was not clear about why one person was diagnosed with one or other of these labels, or even how they di ff ered. What I was acutely aware of was my fear and anxiety about the potential impending impact of their cognitive decline in di ff ering ways, and my lack of experience in supporting them on that journey. deceased, were variably diagnosed with dementia Counselling was not o ff ered to either parent or to us as a family. Perhaps I should not have been surprised to fi nd myself years later training as a counsellor and focusing my end of course research on counsellors’ perceived challenges of working with people diagnosed with dementia. Through my reading for that research I learned that there are more than 100 types of dementia 1 with Alzheimer’s accounting for approximately 60-80% of diagnoses. 2 It is estimated that there are almost 900,000 people impacted in the UK, of which over 40,000 are diagnosed with young onset, prior to age 65. 1 It is also estimated that there are approximately 700,000 informal carers supporting those with dementia. A longer- term estimation is that two million will have the diagnosis of dementia by 2050. 2 Research on mild to moderate dementia has suggested that up to 40% of people diagnosed experience depression and anxiety, and it is known that diminishing cognitions can lead to increasing isolation. 3 Improvements in medical research may bring about changes that alter projections –
for example, by reducing or alleviating symptoms or delaying onset – and such changes in treating conditions could provide di ff erent projected numbers of older people with either mild, moderate or severe dementia. Changes could also impact numbers referred for counselling, or seeking counselling, as its value becomes more recognised and demand increases. What I remained less clear about as I approached the project was how to work with a client group where the theoretical models I had studied did not seem to necessarily fi t, particularly in the moderate and severe stages of dementia. Most notably I questioned how a theoretical model based on growth and change applied when cognitions changed. I further wondered what it would mean as a person-centred counsellor to work with people diagnosed at all stages of dementia, and how common this is in practice. Memory While my research was small scale, the anonymised responses provided valuable insights into the volume of perceived challenges shared by therapists working with people diagnosed with dementias. Perhaps predictably, memory was referenced more than other factors. What was more surprising was the range of other challenges, including
the di ffi culties of informed contracting, power imbalances, competence, working with sensory skills, being physically touched and potentially touching clients, and safeguarding. There were also concerns around how payments would be met, falls and comorbidities handled, working with third parties and understanding behavioural changes, as well as whether the client would remember who the counsellor was, and the existential element of working with clients with a disease for which there is currently no cure and for which some had familial experience. My research focused on survey fi ndings, but I have continued to re fl ect on emerging thoughts from the research of others, which o ff er ways of working when considering some of the points that came up. Danuta Lipinska has done much to highlight the importance of person-centred counselling for people diagnosed with dementia, particularly how ‘the counselling relationship allows the person with dementia to experience herself as she “perceives” herself to be, within her subjective reality’. 4 It is an approach rooted in deep respect and regard for clients with dementia. Cooper and McLeod pointed to the need for systematic research to understand how dementia ‘reconstructs the world of the person with dementia’. 5 More recent research found that clinicians working for NHS Talking
‘I questioned how a theoretical model based on growth and change applied when cognitions changed’
48 THERAPY TODAY MAY 2024
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