Dementia is one of those diseases that many of us fear. We’re afraid to lose the person we love while they’re still alive and relatively healthy. We’re fearful that the worst might happen to them as a result of their illness. We’re also afraid of the long-term effects on other members of our families as a result of dementia. The trouble is, dementia isn’t easily understood by everyday people like ourselves. It’s a mysterious illness locked into our genes and possibly our environment.
Although a lot of research has been done in recent times to help us understand it better, most ordinary people first learn about it through a diagnosis of a close relative. As with most things we are afraid of, it is the lack of knowledge we have about it that fosters the fear. Because of this, we believe it’s really important to tell people about the disease, so that more people can understand and be less afraid. We thought it would be useful to bust a few myths about dementia, to kickstart your knowledge and help you be better prepared if it happens to you or your families.
MYTH #1:Dementia is something that happens to all older people eventually
There’s a long-standing implication that dementia isn’t a ‘real’ illness, and that all older people are forgetful and will eventually suffer the brain degeneration of dementia. Anyone who has cared for a parent or older relative will know this isn’t true. Some people get dementia when they are older, some people do not. Treating all older people as if they have dementia could lead to their wishes not being regarded, and to injuries to their dignity.
Here at Sahan Cares, we believe in person-centred care, which places the person right in the middle of their own care. Even if they have dementia, and are now unable to state exactly what they want with regards to their care, we still place importance on their historical preferences, in close communication with their families and social workers. Dementia is, in fact, what is known as a syndrome: a collection of symptoms that are a result of various brain illnesses, but which present similar symptoms such as forgetfulness, difficulty in carrying out everyday tasks, or changes of behaviour, attitude, or thinking. It is very much a real illness, and should always be treated as such.
MYTH #2:People with dementia have to go into a residential home
Not everyone needs to go into a residential home when they have dementia. It’s frightening to think of our parents and loved ones in a ‘home’ where we aren’t in control of their care. The good news is that not every sufferer of dementia has to go into a care home to be adequately cared for. In fact, some home care companies specialise in dementia care, and others take it in their stride to support families with independent care at home.
MYTH #3:Life is over after being diagnosed with dementia
Having dementia doesn’t mean an instant collapse into incoherent babbling and disordered thinking. It’s usually a very gradual process, and may be diagnosed when distinct memory loss becomes obvious, or can be spotted when a person does something out of the ordinary for their characters. For example, one day, the husband of a lady I was caring for came home having bought two very expensive leather jackets from a travelling salesman in the street. He had been terrifically ripped off, paying £400 for two jackets he didn’t need. Anyone who knew him would have known that was unlike him – it was sometimes hard to persuade him to spend the right money on food for the week, so a crazy price for leather jackets was most out of character for him. He revealed he had been pressured into the sale, which again, was unlike his usual modus operandi. That, in combination with forgetfulness and a violent change in behaviour, was what led to his diagnosis, but it was a gradual development over several years.
Think of the writer, Sir Terry Pratchett. He had dementia for the last years of his life, but was still writing, in tandem with another author, up until his death. Life is not over with dementia, but it does change as the person’s needs and desires change with the condition. The most important things are to ensure they are cared for with high standards, and that their needs are addressed adequately.
MYTH #4:If my mother gets dementia she will forget who I am
Dementia doesn’t affect everyone the same way. Its most prevalent symptom that everyone knows about is the forgetfulness and absentmindedness that usually comes with it. However, that doesn’t always mean that a parent will forget who their children are. As one woman said ‘I may forget where the keys are, but I don’t forget how to drive’. In fact, some people will forget how to drive, but not everyone. Most generalisations are bound to be inaccurate and unhelpful, and the best thing you can do if faced with a fear that is based on a generalised notion like this one is to put it away and consider the individual person instead.
There are some great ways to help boost people’s memories, including games and puzzles, and even just meeting people and chatting can help. The general rule of thumb is ‘use it, or lose it’, and this can be true even if you’re diagnosed with dementia. Early diagnosis has great results for keeping the symptoms of the disease at bay, and memory clinics and other health services available through day care centres, care companies, and health organisations can make a big difference in small ways for people with dementia.
MYTH #5:Everyone with dementia is frightened and miserable
Dementia affects each person differently. Some may become afraid and paranoid, but others may be as happy as they have ever been. Research has identified that people who in their working adult lives were strictly in control of their lives and situations, are those most likely to feel unnerved and strange with dementia. As though something is going on, but they don’t know what that is. Other people who would have normally preferred to put their heads under the sand and avoid dealing with situations, are those who may well have a happier time with dementia. Much depends on the individual personality and how they would have normally coped with life.
However, the care that is given them, and how they are treated, are also important factors. If people are given kindness and love, they will probably have a better time than if they are mocked and treated harshly. If there’s one thing that these myths can teach us, it’s that everyone should always be treated as an individual, and their needs and requirements should be individually assessed and dealt with on a case-by-case basis. There is no need to fear for the future of your parent or elderly relative, even if they have recently had a diagnosis of dementia. The best way you can look after them is to identify a way of caring for them that works for them and for you, and that can be monitored so you can feel confident in your absence.
What will you do for Dementia Awareness Week? Tweet us at @SahanCares and let us know if you’re planning to do some fundraising this week!
