Dementia Myths vs Realities 3/5: Counselling Younger People
Who is the 21st century client when it comes to therapy with people with a dementia? To coincide with World Alzheimer’s Month, Danuta Lipinska continues her myth-busting five-part series about the value and diversity of counselling people with a dementia. Today, she shares features of working with younger clients, from the poignancy of planning for the future, to the therapist’s encounter with her own vulnerability.
Myth 3: Dementia only affects older adults
Our first thoughts of persons living with a dementia often relate to older adults in their seventies through to their hundreds. In the later stages of the experience, we possibly place them in assisted living, residential care, a group or nursing home or a day centre. These men and women may well already be our clients.
However, to make therapy relevant to the 21st century client living with cognitive changes, we must open ourselves to the reality that of the 850,000 people living with a dementia in the UK, 42,325 are those under the age of 65 – a sociological, not a neurological distinction. We can include those women and men who develop a Young Onset Dementia in our practice.
This means that the client may be younger than I am. The client may be the age of my son or daughter, best friend, sibling, or adult grandchild, not just my parent or grandparent. The client’s issues will not only be related to their changing cognition, perception, and communication. They may include their work and career, relationships with children, grandchildren, blended families and partners, divorce, ageing parents, their boss, employees, their students, institutions, and organisations. They may talk about their sex lives (more of which in next week’s blog), creativity, fitness, hobbies, drugs, and finances, to name but a few. The reasons for seeking counselling may indeed present multiple issues, even before a diagnosis is officially made.
Unfortunately, the advances in diagnostic skills do not always accompany age, lifestyle or life-stage appropriate support and care. We are learning and achieving more every day. Often, due to knowledge deficits, regional resources, socio-political and economic forces and ageism, mid-life adults may find difficulty accessing the diagnostic investigations which rule out a neurodegenerative condition.
One in three people with Down’s syndrome will develop Alzheimer’s disease in their fifties. The British Institute for Learning Disabilities (bild) is a UK based organisation that advocates for adults with disabilities, including dementia, to live well.
12 per cent of rare dementias occur in those under 65 compared to two per cent in those over 65. 10 per cent of the Young Onset Dementias tend to be inherited, which creates concerns with siblings, children, and prospective partners. Discussions may ensue about genetic testing and the concomitant psychological and practical concerns involving the whole family. These themes are explored realistically in the popular film, Still Alice.
As therapists, and people, it is one thing to imagine that perhaps 40 or 60 years from now, I might develop Alzheimer’s disease. It is quite another to engage with a client who is younger than I am and has a teenage daughter and an eight-year-old son. The client might not see them finish school, choose a career or a partner or have a family. The client’s partner may well fall in love again. Planning for the future is particularly poignant.
For us therapists, there is work to be done, within our Self, and in supervision, when the identification with our own vulnerability is so stark.
Vibrant advocacy groups created by people living with a Young Onset Dementia, like DEEP (Dementia Empowerment and Engagement Project) in the UK, present compelling arguments to government, families and professional supporters for how they wish to live their lives and how to share inclusive, informed language. ‘Guidelines on language about dementia’ was created by DEEP.
International dementia ambassador, Kate Swaffer’s book, What the Hell Happened to My Brain? is informative and pulls no punches about her diagnosis before her 50th birthday.
How might our therapeutic relationships create the opportunity to empower and support the lives of these men and women to live as well as they would wish to? The generous gifts of these relationships for me, have been both humbling and extraordinary.