Living with dementia
Dementia affects many people – not only those who experience it directly, but also their family and carers. Marsali Taylor talks to nurse Evelyn Sansom about her study of the issues, and to some of those people providing care to their elderly relatives.
Nurse Evelyn Sansom, from Walls, has just finished her honours year at the School of Nursing, Midwifery and Community Health at Glasgow Caledonian University. She chose dementia as her dissertation topic, looking particularly at the impact of the disease on family caregivers, and the implications for nursing care to support them.
“It was my dad that got me interested” Evelyn told me. “He was doing an SVQ with a focus on dementia, and kept getting me to read bits of the books he was studying. It’s such a relevant topic, and people are learning more about it all the time. I realised, though, that as the disease develops you get less information from the person and more from the care-givers, and so I began to look at the stresses on them too.”
Dementia isn’t easy to define as it’s an umbrella term for several illnesses, including Alzheimer’s disease and vascular dementia caused by a stroke. The usual definition involves a progressive decline in memory, reasoning, orientation, calculation, learning capacity and judgement, accompanied by changes in behaviour and personality.
There is a common belief that loss of memory goes with old age, but Evelyn emphasises that this isn’t true to the extent that people think.
“Although normal aging slows down our thinking processes, learning and memory should stay intact before the age of 60 and by the age of 80 they should have declined by no more than 10 per cent. Although thinking will slow down, elderly people should still be able to remember facts and experiences. Our brains are a bit like a computer – the more there is on its memory, the slower it is. Unfortunately we can’t just clear the memory banks and start again.”
Getting memory loss checked by a GP is really important. “People are understandably scared of losing their memory, but for a start, they may not be developing dementia. Dementia-style symptoms can also be a sign of stress or depression, which can be treated with medication, or of vitamin deficiency. Older people can also suffer from mild cognitive impairment (MCI): memory and reasoning difficulties greater than would be expected for their years, but not severe enough to interfere with their everyday life. Over half of the people with MCI remain at that level. Their GP may be able to reassure them.
“However, if the person is suffering from dementia, then earlier diagnosis can mean an earlier access to information and training for the person with dementia and their family, and planning by families of elderly patients is most effective when dementia is diagnosed early on.”
So what sort of things should ring an alarm bell for older people and their relatives? I spoke to several people with experience of dementia and Alzheimer’s in their families.
“I worried about my father for a good while before he was diagnosed”, a woman whose father lives south told me. “I think it was partly because I was only seeing him at intervals rather than every day. It must have been a good five years before he was diagnosed that I began to be concerned. He wouldn’t know what day it was – not all the time, but once or twice each visit – and he’d get anxious about forgetting appointments, he’d keep checking the calendar and repeating them.”
“She started losing things,” a man caring for his mother told me. “She’d put her purse down and then spend half an hour looking for it, then lose it again. The next thing was, she forgot how to make a cup of tea. She’d put in the teabag but not boil the kettle, or fill the pot with hot water but forget the tea.”
These are classic warning signs: memory loss, difficulty performing familiar tasks, misplacing things, problems with language, disorientation as to time and place. The Alzheimer’s website http://alzheimers.org.uk suggests that if a person is showing several of these symptoms, then it’s worth consulting a doctor. Evelyn stressed how important it was that diagnosis should be a gradual process.
“The doctor can judge better over time. It’s not something that you don’t have one day, then do have the next, it comes on gradually. Of course the GP can’t keep the person hanging on and hanging on for a diagnosis, but it’s important the process is done properly, involving the person and their family and explaining what’s happening.”
Evelyn stressed how vital family members are. “Family members are an important source of care for people with dementia. With their help many dementia sufferers can cope at home for much longer, which helps them to maintain some of their independence, which in turn can delay the deterioration of dementia.”
So how did the carers I talked to help their parent to continue coping independently?
“Visiting or phoning regularly”, they all said. A quick visit meant they could remind their parent of the day and date, mention upcoming appointments and generally check that all was well. On top of that there were several suggestions for mechanical aids.
“Mam was very smart,” said a woman helping her mother in Shetland. “If she couldn’t remember what day it was, she went and checked the “next lift” at the pillar box. Or she’d consult the TV Times. Once she found that harder, I got her a clock, one of those office ones with the day and month written in words.”
“I got Dad one of those pill boxes that you fill each week,” said the woman looking after her father. “He has heart problems as well, so he had three pills in the morning, one at lunchtime and another two in the evening, and he was finding it hard to keep track of them. The box was clearly marked with the day and time, so it helped remind him what day it was too. Now he gets one of these blister packs from the chemist, with all his pills in, but I don’t know if that can be done in Shetland.”
“Mam was fine with money for a good long time,” her son said, “but eventually she got confused with which coin was which. Luckily cards saved her having to bother with that, and she’d made sure her PIN number was one she could remember easily – the day and month of her mother’s birthday. You can get PIN numbers changed – make sure it’s a number from further back in time.”
Keeping a diary can also be really helpful; it not only reinforces what was done that day, but can also be used later as a check. Puzzles and word-games are said to be beneficial in keeping the brain active.
Equally important for the older person and carer is not altering things around the person’s house, particularly technology.
“I got Mam a new TV, with a much bigger screen,” the Shetland woman said ruefully, “and it turned out to be a really bad idea. She loved the big picture, but just couldn’t figure out how to work the remote control, and if one of the grandchildren left it in ‘DVD mode’ then she was unable to watch any TV until someone came round to fix it. I wish someone made a modern TV with old-fashioned buttons for the stations on it; she could manage that.”
“Mam just didn’t do the microwave,” the man said. “I thought it would be safer for her than gas, but she’d never had one, and she just couldn’t get the idea of being able to cook plastic in an oven.”
It’s not just electrical goods which need left alone. The “auto-pilot” for finding everyday items is very important to older people with memory difficulties.
“The drawers kept getting stuck in Dad’s chest of drawers,” said the woman caring for her father down south, “so we got him a new one, but it was too wide for the space, so we put it on the other side of the room. He’s always complaining that somebody has taken his clothes, just because they’re not where he expects.”
“It’s not the actual workload that seems to be the stressful thing,” Evelyn Sansom said, “but other things arising from it, for example if a relative is trying to help, and the sufferer is resisting that help.”
“That’s certainly true,” the Shetland daughter said. “Mam’s that stubborn. She’s at that stage she dresses in the oldest clothes she can find, whatever state they’re in, and I was reduced to getting my brother to take her over to his for Sunday lunch so I could go in and just go through her wardrobe and get rid of everything that was really done. You don’t like doing it, but it has to be done.”
“Dad spills tea down his jumpers,” his daughter said. “Every time I go south I just take every jumper I can find and wash it. Then he complains about the line of washing, and lectures me on wearing out his clothes.”
Another thing that can be difficult for a carer is the changing relationship that they will now experience with the person they are caring for. Spouses seemed to feel this changed relationship less, and women caring for a parent feel it more:
“There are times with Mam,” her daughter said, “that I really need my mam to hug me, instead of me being a mam to her – but that’s not going to happen anymore, because although she’s still my mam, she isn’t a mam either, she’s a child who needs cared for.”
Family conflict is another strain on relatives: “differences of opinion about the seriousness of relative’s condition” can be a real problem, Evelyn said, “and a lack of understanding about how much the caregiver is actually giving to the relative. This family conflict seems more stressful than the extra work and lack of social time, but those too can be important, as they can lead to lower self-esteem, which can in turn trigger depression.”
“The family thing can be really difficult,” the woman looking after her father south agreed. “You want it to be a joint decision between you, and you all want the best for your parent, but you each have different ideas on how that can be achieved. It goes back to early diagnosis, where your parent’s still able to make their own decisions of what they want you to do for them, and you can follow that – that’s much easier.”
Evelyn also emphasised the importance of getting legal things sorted. A financial power of attorney means a named person can deal with bank business, and a medical one means a carer can talk to the doctor. Both have an agreed start point – for example, that it will only become operative when two doctors, in consultation with the family, agree that it is now necessary.
Worry about their parent or spouse’s health and safety, coping with increasingly changed behaviour and tactfully taking charge of an extra household’s work and finance can have a serious effect on a carer’s health. As well as this extra worry, the carer may feel torn between the person with dementia’s needs and the needs of their own family; they may lack energy for their own job; they will have less time for their own social life, and they may also have extra financial problems.
As a nurse, Evelyn was particularly interested in what the medical and social work professionals could do to support both patients and their carers. There’s a long list of help which caregivers can access: printed information, support from a social worker, financial help, respite or day care, training of practical skills, residential holidays with the care recipient, home help, hotlines, crisis service, meals-on-wheels and finally help in becoming a legal administrator.
“Again, it’s really important to help carers early,” Evelyn said. “Those who have more information early on are prepared for the decisions they have to make and the support they have to give as the disease progresses, and they can make decisions with the patient before the eventuality.
“District and community nurses are in a perfect position to offer education about dementia and find the caregivers’ needs. Training caregivers can increase their confidence in their ability as a carer, which can in turn decrease the level of burden felt. Nurses can also play an important role in strengthening the positive aspects of the caregiver and care recipients’ relationship and promoting appreciation by other family members.
“Every situation has to be looked at holistically. The nurse needs to be responsive to carers’ needs as well as those of the patient. What many carers don’t know is that a 2002 Act gave them the right to an assessment of their ability to care, independent of any assessment of the care recipient, and the results of this assessment must be taken into account when deciding which services should be made available to the care recipient. It’s really important that carers take up on this. For example, if you have an elderly spouse who can’t help more physically, then what they need is maybe someone to do the cleaning, or help the person with dementia to wash. If the caring spouse doesn’t get help, then their health will deteriorate too, and so there will be two people needing looked after.
“Respite care is really important too, whether it’s an afternoon off once a week, or a couple of weeks in the care centre for the person with dementia. Home helps, befriending services, what matters is that the carer has someone they can trust to look after their person and let them get a total break.
“Often you find that the whole family unite to be care-givers. As a nurse, I’ll appreciate them so much more, having done this study – they’re saving the NHS a huge amount, and more importantly, they’re giving their spouse or parent such a better quality of life. However good a care centre is, people prefer their own home, with familiar faces around them.”
Evelyn’s study also points out that many people find caring for an older relative a positive experience.
“Approximately a third of caregivers don’t experience negative health effects,” Evelyn said. “Even as the person with dementia becomes challenging to care for, they still report positive aspects of their caregiving experience. They say that they feel good about themselves as they feel needed, that it gives meaning to their lives and it enables them to learn new skills. It has been well established that people with dementia who are in supportive relationships are happier and healthier and they live longer than those who feel alone and isolated. In spite of all the difficulties, many caregivers persist for years in their role as a caregiver and have many positive caregiving experiences and happy memories.”