Living with dementia

To mark Dementia Awareness Week, a former GP talks about how the illness dramatically changed her life:

I was once the executive partner of a large General Practice in Southampton.

I loved my work and my patients and was involved in teaching. But I retired early as I knew something was wrong.

Apart from ‘memory problems’, I could not find my way to the branch surgery or even my way home. I did not recognise close colleagues and was also experiencing olfactory hallucinations.

As I looked and sounded normal, it took five years to get a diagnosis of Alzheimer’s. Having been a well-respected doctor, consultants were ‘friends’ who could not consider such a diagnosis.

This is a real problem for many of us who are younger, as society seems to assume people with dementia are old and frail, whereas an early diagnosis enables us to do something to slow progression.

My father had dementia so I am privileged in having family, professional and ‘inside’ perspectives on the condition. Everyone is different and I am constantly learning from others who walk the same path, as I now live in a dementia-friendly retirement community run by the St Monica Trust in North Somerset, which has independent living as well as 24-hour care as necessary.

I moved here with my husband when I was unable to run my home any more. I did not recognise friends staying with us, would forget to cook meals for them or, if trying really hard, cook the same meal twice on the same day. One day I did not recognise my husband. Sadly, he died soon after we arrived.

I have difficulties with ADL but continually seek new strategies to cope. We can be disabled by having everything done for us, instead of with us. I cannot cope with shops, stations or money. I am supervised when bathing and need help with my medication. I wash up once a day as otherwise I cannot remember whether I have eaten or not.

I consider my dementia an unexpected gift in the same way as pain might not be ‘wanted’, but can protect from further damage. I received no help or professional support after my diagnosis, so produced my own leaflets to explain about dementia to my friends and acquaintances.

Fifteen years ago very little was done after a stroke, but now we expect improvement even though damage has occurred in the brain. So, why not after a diagnosis of dementia?

It is six years since my diagnosis and I am convinced cognitive stimulation in a social context – with laughter, exercise, good diet, appropriate medication etc – can make a tremendous difference, and I have been so encouraged to see increasing evidence to support this.

I have been running twice weekly memory groups here at Sandford Station for the other residents using evidence supported materials for over four years with positive results.

We all need purpose and acceptance, and I find that in my role in increasing dementia awareness.

Jennifer Bute

Jennifer Bute is a former GP.