Jack
Jack reports having felt increasingly absent-minded over the past few years but attributes this to ‘old age’.
He has coped well and enjoyed life for many years with his regular routine of gardening and visiting the local pub two nights per week.
However, his wife is worried by his worsening memory. He keeps losing his wallet and glasses and forgetting the names of their grandchildren and great-grandchildren, whom he sees often.
Concerns were raised to their GP four weeks ago when he was suffering from a chest infection and became grossly disorientated in time and place.
Jack seemed to think that he was still working, asked to go home when he was in his own front room and misidentified his wife as his mother, who has been dead for many years.
This crisis has resolved but there has been a formal diagnosis of dementia and now Jack is worried that he is ‘going mad’. He remembers his mother developing dementia and requiring hospital care over a long period. He feels that this was a very undignified and depressing existence and he would rather be ‘put down, like a dog’ than go through the same.
Jack is finding it difficult to settle back into his normal routine and now constantly follows his wife around the house, seeking reassurance and refusing to be left alone. His wife is finding this hard to cope with.
Jack finds himself in a position that will be familiar to people living with dementia and their families – and in a position that is much less familiar to most formal carers.
People working in residential care, for example, who are used to helping people who need extensive support and physical care and who often have little remaining insight into their situations, need to stretch their imaginations to appreciate both the terrifying nature of a diagnosis of dementia and the potential that remains for a full and enjoyable life.
The toolkit is designed to encourage people living with dementia, together with formal and informal carers, to keep this potential at the front of their minds.
Jack is facing very real changes to his life, and his anxieties are made worse by his sense of his mother’s suffering.
It is entirely natural to have a sense of loss and to be frightened, depressed and angry in his situation.
Anyone speaking to Jack about his living with dementia needs to recognise the grief and anxiety which arises from his reactions to his mother’s experience. But they also need to recognise that he is in no sense less of a person.
One of the most inspiring developments for people living with dementia in the UK and elsewhere over the past 10 to 15 years has been how people have begun to accept the illness they are living with and to find ways to combat it.
A diagnosis of dementia is no longer something to be ashamed of, something too terrifying to be discussed, an instant ticket to the ‘loony bin’.
It is a condition that can be rationally analysed and adjusted to: self-help groups, in particular, have contributed to people and families fighting their way out of the crippling depression that so often accompanied a diagnosis of dementia and finding ways to make the most out of their lives.
Applications for DemTalk
What are the practical applications of DemTalk for Jack and his family?
Clearly, consideration of a number of areas from the toolkit would be helpful in this context. Putting yourself in his shoes, listening skills and speaking skills spring immediately to mind.
It is not surprising that Jack is anxious, and that this puts a lot of strain on Jack and his wife.
It is natural to be frightened and to dwell on negative experiences or stereotypes. It is very difficult for carers to offer reassurance about a condition that they may themselves find overwhelming and frightening, about which they may know very little.
In this case, as in most others, knowledge is power, and reaching out for help is natural. Try the following:
- Find self-help groups in the area, both those offering peer support to people living with dementia and those geared around the needs of carers.
- Contact special interest organisations like Age UK (formerly Age Concern and Help the Aged) and the Alzheimer’s Society or more specialised bodies such as the Lewey Body dementia group. These groups have a lot of experience and can be very helpful.
- Contact Admiral Nurses if they are available, a group of nurses selected for their ability to work with people living with dementia and their carers.
- Seek out the Residents and Carers Association, the funkiest, stroppiest and most likeable large pressure group in the UK.
- Read some of the wide literature available and the advice available on the web.
- Look for formal counselling for people living with dementia where it is available.
- Talk to mutual and personal friends.
- And, always and most importantly, talk to one another. People living with dementia and their carers need to communicate!
In practical terms it is also worth considering what will help Jack settle down.
As with anyone else facing anxiety, the re-establishment of routines is often helpful. Encouraging and enabling Jack to re-engage with his garden and his friends in his local pub is the most natural place to begin.
Help from friends and family may be necessary and should be unashamedly asked. Jack’s wife also needs to make sure that she has made space for herself and her own needs.
Is there a case for talking to Jack directly about his memories of his mother and her difficulties with dementia?
It depends on circumstances and on the individual. Some people might find it helpful to re-discuss a traumatic episode or perhaps to begin looking at present day alternatives to the almost universally relentlessly grim institutions to which people living with dementia were once entrusted.
Others will be more comfortable finding the more positive aspects of their own position and re-establishing a balanced life, choosing if and when to look at previous experiences or options for the future.
Suggesting options and allowing people to explore them as they wish is the most practical and helpful approach.
