Living with Dementia

How people with a diagnosis of dementia can be supported in day to day living’ is not something that receives much press, nor funding.  Funding support is directed at medical research to develop a cure, developing pharmaceutical solutions which mask the disturbing symptoms that arise from damage to the brain, or ‘may’ slow the disease process down.  Advances in medical research are an important source of hope for people with dementia and their families, not least those living with risk – the awareness that they, or their family will develop a genetic form of dementia in the future.  However there are 800,000 people in the UK who are living with a form of dementia, and 40,000 of those people are under 65 years of age, may be of working age, may have school age children, may have a mortgage, and sometimes people can be in their early 20s, with all the interests and expectations of people of their age group.

I am committed to developing effective and validating therapeutic activities for people with a diagnosis of dementia and their families, at any age, at any stage of the illness.  These interventions are informed, designed, guided by an understanding of how people live and change (Personal Construct Psychology), and Cognitive Neuropsychology (the discipline which identifies the way cognition is organised in the brain, and therefore how we can intervene to either improve its function, circumnavigate it, or compensate for it).

Alongside a Counselling/psychotherapy service for people with dementia and/or their families, I am exploring how the known benefits of Yoga can be made affordable and accessible for people with dementia and their families.  I was inspired by working with a woman who was 80 years old, had a diagnosis of Alzheimer’s Disease, and remembered very little of what was said to her, asking the same questions every few minutes.  She would, however, always remember is she had experienced a particular yoga posture the previous week.  She appeared to have a body memory that was intact.  I now have experience of working over two years with a woman of 67 with vascular dementia, several couples who share a session of individual and partner yoga, and in working individually with residents in care homes.  See my article in the May/June 2015 edition of the Journal of Dementia Care 

I hope that before too long these services will become easily accessible for everyone with a diagnosis of dementia and their families, and am working hard in partnership with Dementia Pathfinders with this aim in mind.  Whilst yoga is a skill you will always be improving, the fundamental goal of mindfulness is something that is helpful to everyone and can be shared to some extent by anyone who has experienced it.  To this end I am running one day workshops for relatives, carers, yoga teachers, and health professionals who are in a position to enable people with dementia and their families to benefit.

Along the same lines, there are other activities which tap into ‘implicit’ memory, for example Dance and Music, and there are a number of projects available for some people around the country, including Circle Dance – see the Dementia Pathfinders website for the evolving list of services.

My newest project is Cycling for people with dementia in partnership with Cycle Training UK – if you, or you know someone who might be interested, please email me. Go to Therapeutic work with people who have a diagnosis of dementia for pictures and updates about the project.

Counselling work with people with dementia uses Personal Construct Psychology (PCP). In my role as an Associate for Dementia Pathfinders I am involved in a support group for people with young onset dementia in SW London at St George’s Hospital in Tooting.  There are families attending from as far afield as Enfield, if you or a family member have a diagnosis of dementia, you are under 65 years old, and can make the journey then you are welcome to join the group.

During past meetings where I facilitated a group of people with a diagnosis of dementia to elaborate their experience of living with dementia, identifying those things in their life that are supportive. Some illustrations of the work we did follow:

A group member selected the card on the left to express the response of others to her telling them her diagnosis, how much it hurt that some of her friends walked away as if she was no longer ‘one of them’. Her point was that she is still the same person as she was, and in need of her friends. Another group member selected the picture of the seaside to express that anything that gave you a holiday from your symptoms were the things that helped most … other group members contibuted music, laughter, and yoga as some of the things that made a difference to them.

people's response to my diagnosis a holiday from my symptoms

 

Recent meetings have given people an experience of Bibliotherapy, Music,  and the next meeting is focusing on Naomi Feil’s Validation Therapy, an approach to communication with people with dementia that fits with the more comprehensive theory of all people that is Personal Construct Psychology.

 

PCP provides a theory that helps us to stand in the shoes of people, in this case people who have the additional challenge of progressive disabilities of memory, perception and thinking.

Please contact me directly about therapeutic work with people with dementia on clrmrrs@me.com or 07545 287139. My publications are all available online here