Dementia Myths vs Realities 2/5: Making Sense of Self

Myth 2: People living with a dementia can no longer communicate with us, and we can no longer communicate with them

On my return to England in 1997, I was fortunate to establish the first known dementia specific counselling service for men and women with and without a formal diagnosis. This three-year pilot project funded by the National Lottery was based in London. I was able to build on my counselling experiences begun during my Master’s degree in New Hampshire, USA where I discovered the means through which to support clients, like the man in the waiting room Dementia Myths vs Realities 1/5: Purposeful Engagement

Carl Rogers’ Person-Centred approach to therapy is based upon a foundation of deep relating to people. He believed that under ‘necessary and sufficient’ conditions, clients would be able to engage with their Self, to better define and determine their ‘way of being’ in their own lives. As therapists, Rogers believed that we could accompany the client with empathy, acceptance and congruence, his Core Conditions for therapeutic relationships.

I learned that I could be most authentically my Self when offering these Core Conditions. They were elemental, non-hierarchical and, very importantly, offered an opportunity for mutual relationship. At the time, this approach remained firmly outside of the medical model. The agreement that our conversations would be confidential increased clients’ willingness to share at depth, as they were assured that I would not be telling their wife, son, or GP what they were telling me.

Clients demonstrated great motivation and commitment to counselling, a fierce determination to tell their story and unwavering honesty in the face of unpredictable cognitive, behavioural, and relationship changes. Clients in the early to mid- stages of a dementia, or with a Young Onset Dementia well under the age of 65, made their own appointments, came to my office on a bike, in a cab, on the tube or driving their own car.

There certainly are challenges in terms of the use of language and finding words that enable engagement. The client and I co-create how we are going to communicate. I will ask for permission to offer a word or a sentence that I think the person might be struggling with. I will reflect back their words and their tone, their body language. Little did I know that this groundbreaking work would be the foundation for my first book.

Throughout life, we all continually attempt to make sense of Self, our inner being. When the brain is affected by a progressive, neurodegenerative condition, cognition, perception and connection with Self can be significantly changed. How, then, do we continue to make sense of Self in relationships, work, in our thoughts, and desires? These questions are courageously lived out every day by persons with a diagnosis. Counselling can offer uninterrupted time for exploring these changes and discovering who one wants to be.

Christine Bryden, who was diagnosed over 20 years ago with dementia in her late forties, describes her Self explorations. Her recent book Will I Still Be Me?, part of her doctoral thesis, gives insight into her lived experience of Self. She argues vehemently for her Self from within her own experiencing of dementia. She offers us the metaphor of a tin of baked beans. Even if the label has been rubbed off, telling us what is inside, it will still be a tin of baked beans. She argues that her Self, though perhaps going through variations, is recognisable to her as who she was, is and continues to be. Her remembering and recall about her Self is more fluid now but still fiercely, essentially there.

If this is true for Christine, might it also be true for clients?