Dementia - It's not just the sufferer who loses out

As a counsellor currently involved in dementia training, with experience in befriending and running activities in a nursing home, a trustee of Age Concern North Norfolk and part of the Dementia Friendly Steering Committee in Cromer and Sheringham, I am very aware of the loss that people suffer when a loved one is stricken down with dementia. I live in a part of the world where there is a particularly high proportion of elderly people as so many folk retire here.

Dementia is something that is beginning to happen to people more frequently and at a younger age.  There are also many types of dementia, the most common being Alzheimer’s, followed by Vascular Dementia, Fronto-temporal Dementia and Dementia with Lewy Bodies.

People often don’t realise that there are many different kinds of bereavement - and losing one or both of your parents or a close friend to dementia can be even more painful than their death. It is like a death that is not actually a death, because the body of the person that you love is still present - but the essential person that you know and love seems to have departed, or been replaced, by something alien and strange. There will be glimpses of the former loved one from time to time but its still a gradual decline where it seems that you lose the person by degrees. The good times can become excruciatingly poignant as they become fewer. Add to this the frustration of being asked the same questions over and over again, as the person has forgotten your answer... and then finding in some cases that you are not even recognised by someone who you love and who loves you... and you can see how it makes perfect sense to talk about your loss, and your bereavement.

You may also find that you are not just grieving for the loss of the dementia sufferer as you used to know this person, but also for the loss of other things in your life - such as your own youth. If you have health problems yourself, or are going through “the change”, you may fear the onset of old age and be completely unable to face the idea of dementia at all. In middle life, many people are either working long hours and just coping with that, plus the demands of family in various ways. But many others take early retirement and then find that they need to reassess “what its all about” as there is more time to think about it.

The first thing to do is to accept that how you feel is normal. You are a living, breathing and feeling person who has had to come to terms with the premature loss of someone dear to you... and you need to give yourself time to recover, at your own pace and not worrying about the expectations of others. 

Find a counsellor trained in bereavement and loss to talk things through with. This will not only help you, but your wider family and friend networks. It will give you a place to talk about your grief, your anger, and any other negative emotions that are part and parcel of any kind of loss. If you are a carer you will need to look after yourself and it is important not to neglect this.

There is lots of information online about dementia and your doctor’s surgery may also have more local information.

Dementia friendly communities (you can find a link on the Alzheimer’s website) are now becoming a more usual idea, as are dementia cafes and other kinds of support. You will find that you are not alone as you look around at what may be available, and this will also be of help to you.

Two books that I have enjoyed are:

Where Memories Go:  Why Dementia Changes Everything (2014, S Magnusson, Two Road Publishing (Hodder & Stoughton)

A Deeper Perspective on Alzheimer’s and Other Dementias (2015, M Carnarius, Findhorn Press)