The Challenge of Dementia
I wake up. Within 10 minutes the alarm on my phone bleeps, ‘Haircut 9 am today Thursday’, it informs me. It costs me a bottle of wine if I forget!
Over breakfast we discuss who plays the male lead in Last Tango in Halifax. I can picture him but can I remember his name? No!
Later I go upstairs. When I reach the top I suddenly think, “what have I come up here for?” Oh yes, the newspaper with last night’s TV. It’s Derek Jacobi.
These memory lapses are a normal part of ageing, but what if I had stood at the bottom of the stairs with no idea of what IS upstairs? What if I forgot the name of the person across the breakfast table?
In the early stages of dementia the memory lapses, behavioural changes and cognitive impairment are often not too disabling and, with the right attitude, life can still be fulfilling and fun.
As the disease progresses (and this can be very variable), it can become far more challenging but I don’t intend to dwell on the worst-case scenarios. I have heard some harrowing stories, but with the right support and professional help (which, as yet, is not always there), even these situations can be handled with dignity and understanding.
Once a dementia diagnosis has been made, there is actually little the NHS and doctors can do. I know this frustrates many in the NHS who would like to do more. There are drugs that can relieve symptoms in some cases, but there is, to my knowledge, no treatment to stop the progression of the diseases that cause dementia. (Dementia being the umbrella term for the symptoms caused by a number of brain diseases, Alzheimer’s being the most common.)
BUT, there is a lot that can be done to help someone live with dementia and they should not be defined by their condition but be encouraged to concentrate on what they can still do rather than what they can’t. The person first, NOT the dementia.
After her training as an Occupational Therapist, June worked for a time with people with dementia. A couple of decades on, she is a busy energetic mother of three all of whom are now teenagers. Four years ago she became interested in dementia again.
Initially, she volunteered with the Alzheimer’s Society, with a group in Market Harborough. Through the Alzheimer’s Society she learned of a ‘Sing for the Brain’ group in Leicester, and joined that too. It has been a great success: it began with just two people, but now has 50, and everyone loves it.
After about two years Lottery Funding it has come to an end. However, the group was determined to continue and has changed its name to ‘Musical Memory Box’; it is now self-funding but looking for sponsorship.
In future articles in this series I plan to highlight the help that is available, both locally and nationally, including via the Alzheimer’s Society, AGE UK and VASL (based in Market Harborough). Then there is Dementia UK who train Admiral Nurses, whose role can be life changing and even life saving. They are as yet only available in Leicestershire through their telephone helpline. Meanwhile, it is worth pointing out that there are Dementia Support Groups in Market Harborough, and several Dementia/Memory Cafes across the city and county.
There’s a group which meets every second Monday of the month at The Well in Kibworth (Run by Dementia Harborough). June visits the Well regularly and tells me: “Meetings there are very happy - it’s a brilliant place as the staff are understanding and you are always made to feel very welcome.’’
June is just one of many people I have met who have a very positive attitude towards this illness. There is much information online and you might want to read Wendy Mitchell’s book 'Someone I used to know’.
If you have views or experience of living well with dementia I would like to hear from you - firstname.lastname@example.org.