In this blog, I will attempt to share my defining experiences of counselling women and men living with a dementia. Over 32 years and across two continents, many myths have been debunked for me, and I continue to develop a new appreciation for, understanding of, and ability to be surprised by, our highly adaptable brains and the individual’s determination to make sense of Self.

Myth 1: People living with a dementia don’t know what counselling is or how to engage with it

As I came out of a family support group for caregivers of someone living with a dementia, I had no idea that I was about to set foot, not just on the road less travelled, but on a path that was well and truly hidden from me and most of my colleagues. The hem of my jacket was pulled by a man sitting in the waiting room beyond the closed door. “How come she gets to have her own group when its MY brain that has gone AWOL?” he asked me pointedly. I stopped in my tracks. This was 1988 in rural New Hampshire, USA. This was the first moment that changed my life as a therapist. It set me on a meandering and sometimes bumpy, yet determined course I still follow 32 years later.

Back then, we had just begun to realise the need for psychological support and education for family caregivers. This was and continues to be essential work to which many of us are committed in individual and group work. However, I was shocked that I hadn’t been paying attention to the needs of the person actually experiencing the life altering challenges and changes to Self.

Here began my quest to advocate for and include in my counselling practice those people for whom a sense of Self was becoming more elusive and, at times, challenging. This was especially relevant in light of the current attitudes that the person was an ‘empty shell’ for whom nothing could be done, and that communication was impossible. I believe that the individual has the right to access therapy if they wish to do so, irrespective of age, diagnosis, and living environment. As a result, I have counselled clients with a range of dementias, from age 39 - 94, in their own homes, day centres, care homes and hospitals, and mostly my counselling office.

On one unexpected occasion, I had an amusing, yet sobering experience; memory still had the upper hand, depending on what might need to be remembered. Rejection never tasted so sweet as when Tony, referred for depression related to his memory loss, shouted from the end of the care home hallway the week following our only session, “Don’t you remember, I said NO MORE COUNSELLING!” Clearly, he did.

One of the questions I am often asked is, “Why would you counsel someone with Alzheimer’s disease?” My reply is “Why wouldn’t I?”

I discovered early on that the person living with a dementia and I have more in common than we don’t, and that as much as sadness, grief and despair were present in the sessions, so were intellectual curiosity and resourcefulness and humour. One dark winter day, the client kept looking down at my feet as she spoke. I tried to stay focused until it became too much for me. I finally looked at my feet and found that I was wearing two different shoes

“Ah,” said I, smiling sheepishly. The client chuckled: “I thought I was the one with the problems.”

Danuta Lipinska
Danuta is a specialist in Ageing & Dementia Care, and a counsellor who develops bespoke counselling services for people living with a dementia. She is a senior facilitator at My Home Life, an evidence based Leadership Support Programme for care home managers based at City, University of London.
 

This blog is the first of a five part series written by Danuta. If you’d like to read more here are links to the rest of the series:
#2 Making Sense of Self
MYTH: People living with a dementia can no longer communicate with us and we can no longer communicate with them.
Read it here

#3 Counselling younger people
MYTH: Dementia only affects older adults.
Read it here

#4 Sex, Intimacy and Relationships
MYTH: Sex, intimacy and relationships aren’t relevant when counselling people with a dementia
Read it here

#5: The Carer’s Experience: Who Cares?
Myth: People with dementia are always ‘loved ones’, and their carers are usually their husbands, wives or adult children.
Read it here