1.3.3 Change on a daily basis: shared care for the elderly
In the case of Mr Bright care is shared between his wife and formal carers and changes in the place of care are primarily to give Mrs Bright a break and Mr Bright a change of scene.
Click below to hear an audio clip describing a day in the life of Mr and Mrs Bright.
Transcript: A day in the life of Mr and Mrs Bright
Click to read the media notes on the above audio.
Activity 5: Shared care
Central to this activity are Mr and Mrs Bright. You have just read some of Mrs Bright's feelings about coming to live in Bletchley 40 years ago and living in her community. Mr Bright, a former engineer, has Alzheimer's disease and lives at home with his wife. His illness has affected his short-term memory and as a result he repeats things. Whilst he is quite physically fit and active, he has also lost control over some of his former personal skills such as washing and going to the toilet. Further background details are given in the Media Notes and you might like to read these now (click on "view document" above).
Listen now to the audio clip. This has been arranged to give you a sense of how Mr Bright is cared for during the day. It begins and ends with Mrs Bright. You should listen to the whole sequence, then listen to it again and try to answer the following questions:
How is Mr Bright's care shared and why?
What does this mean for Mr Bright? Does he have any control over the situation? How does he react to changes in time and place?
What does this mean for Mrs Bright – how does she react?
Mr Bright's illness places great demands on his wife but they are determined that he should stay at home and so his care is shared between their home and a day unit. Mrs Bright rises early and is in constant attendance on her husband. I don't know about you but I felt quite tired listening to her speak. I could almost hear the relief in her voice when she said ‘By 8 o'clock I know June's going to come’. In this case, even though Mr Bright is seen as the client who June comes to ‘wash and dress’, it is also Mrs Bright's needs that are being met.
June is one of three home carers who assist Mr Bright with getting up and going to bed. June says that she ‘doesn't do anything for Mrs Bright’ – well not in the official sense of the word. But listen to Mrs Bright say ‘It's such a relief. It's lovely to have all this going on in the house’. Here care is shared, June knows that her work only makes a ‘temporary difference’ … ‘you can't make a permanent difference but you improve things for a while’.
Mr Bright also attends a special day unit for older people with dementia. But it seems again that Mrs Bright's needs are central to the provision of this service. Brenda Masters says ‘Alan's been coming here since January. He started off coming here three days a week which very quickly went to five days, the need is very great there for Pauline, his wife, to have some time to herself really, she was getting very tired, very stressed’.
For Mr Bright the consequence of this shared care is that other people attend to him in his own home and he also leaves it for part of the day. His condition has meant that he has had little control over the situation. Care has been provided to support Mrs Bright in her caring. However, this has also meant that Mr Bright has lost some of his personal privacy. He is now assisted in a number of intimate tasks by a formal carer who has access to his own personal space. You will remember how June coped with this invasion of privacy as a care worker.
A bus comes to take Mr Bright to the day unit, so at this point he becomes someone else's responsibility. How does this change of place affect him? Well it's difficult to tell but listening to Brenda Masters at the day unit we do get a sense that he feels disoriented and dislocated. She says that he needs a lot of reassurance. We noted earlier in the unit that many people feel disoriented and anxious in unfamiliar settings; however because of his short-term memory loss, the day unit may seem unfamiliar to Mr Bright every day. Every day he may have to negotiate people, place and spaces as if for the first time. Brenda says:
We welcome Alan as he arrives off the bus. He needs guiding into the unit, he's quite disorientated and he may go off down the drive. We encourage him to sit down and have a cup of tea and calm him down because he's quite anxious, we'll sit with him and try to do something on a one-to-one basis. He does enjoy talking but finds focusing on any sort of topic for a length of time quite trying. He gets lost and confused and his mind blocks. He likes to get up and walk around – he's quite an active person, he has a lot of energy. During the course of the day he requires a lot of reassurance and orientation.
For Mrs Bright, Mr Bright's absence means a breathing space. It gives her some privacy. She attends to herself – moving the main meal of the day to lunch time so that she can cook and eat properly; going out (on this day to the Carers Support Group) and spending time on her hobby, playing the piano.
Mr Bright has to face change on a daily basis, moving between individual and group care. While we do not hear about it here, he also goes for the occasional week's respite care in a nearby residential care home. At the time of the interview Mrs Bright told me that a recent experience of respite care had not gone so well: Alan had been to another home which was unfamiliar and this had unsettled him. Familiarity of place and being able to orient yourself is all part of feeling in control over your everyday life. For Mr Bright, whose illness creates further disorientation, familiarity of place and routine are even more important.
The Brights’ routine now includes shared caring to meet some of their different needs. Yet at the heart of their situation is a determination that Mr Bright should remain living as much as possible in his own home maintaining some continuity in his life and familiar surroundings.
Dementia and Alzheimer's disease
Dementia is a condition characterised by a progressive loss of mental abilities accompanied by changes in behaviour and a gradual decline in the skills needed to carry out ordinary daily activities. The likelihood of developing dementia increases as people get older. It affects less than one person in a thousand of those below the age of 65 and between four and five in a hundred of those over 65.
In the over-65 age group there is a strong increase in the rate with age: about 2 per cent of those aged 65–75 suffer from dementia, rising to over 20 per cent of those over 80. It is estimated that there are 750,100 people with dementia in the UK (Alzheimer's Disease Society, 2001).
There are a number of different types of dementia. Alzheimer's disease is the most common type accounting for 50–60 per cent. The disease was first described by Alois Alzheimer, a German neurologist, in 1907. Symptoms vary from individual to individual. In the early stages the person may be more forgetful of recent events, more likely to repeat themselves in conversation, less concerned with activities or other people, less able to grasp new ideas or adapt to change, more anxious about having to make decisions, or more irritable or upset if they cannot manage a task.
As the disease progresses, loss of short-term memory is likely to become more obvious and people often become confused about time and place. In later stages they may no longer be able to recognise those who are close to them and become increasingly dependent on others for care.
At this point it is worth noting the similarities and differences which exist between the pattern of Mr and Mrs Bright's lives and Sabrina and Tristan, the children who spend parts of their day at the childminder's house. While their needs are very different, both the children and Mr Bright have to make transitions between different people and places.