Dementia is a word that strikes terror in many. And no wonder: newspapers regularly feature headlines that sensationalize the ‘misery’ of dementia ‘sufferers’. Yet there is a growing number of people with dementia who are active as campaigners, and they reject such language as stigmatizing. Instead, they call themselves people who are living with dementia. In one survey more than two thirds said they were living well with dementia.
Does the way we talk about dementia matter? Yes. A recent survey of the general public by the Alzheimer’s Society asked: “if you had a physical symptom, would you see a doctor right away?” 60 per cent of the sample said they would. However, asked whether they would see a doctor right away for a non-physical symptom, such as a memory problem, only 2 per cent said yes. For many people, fear of discovering that they have dementia will keep them from talking to their GP.
It’s beneficial for people who are worried about their thinking to get it checked out as soon as possible. They may learn that their symptoms aren’t caused by dementia. Did you know that memory loss, the symptom most associated with dementia, can also be caused by other things such as stress, depression, infections, nutritional deficiencies and even lack of sleep? Moreover, with around 100 types of dementia that can affect the brain in different ways, memory loss is not necessary the first sign. The range of early dementia symptoms includes reading problems, difficulty judging distance, less fluency when speaking, and even becoming less kind and caring. Because of this a diagnosis can take time to reach: other possible causes need to be ruled out.
Getting a diagnosis is worthwhile, as without it you won’t be able to get support to live well with dementia. In Scotland everyone who receives a diagnosis is entitled to personalized support which, if their dementia is in its early stages, will be from a Dementia Link Worker. Link Workers can help someone understand and adjust to their diagnosis, to plan for the future, and to get the support they need to live well with dementia.
That support can come from a range of sources, including other people with dementia, and opportunities to enjoy supported activities, from singing to sport. Did you know that many of the things that help people to live well with dementia are the same as those that make it less likely someone will get dementia in the first place? Physical exercise, eating well, staying within safe alcohol guidelines, stopping smoking, socialising and challenging the brain can all play a part.
Age Scotland’s Early Stage Dementia project offers free guide booklets on a wide range of dementia related topics. You can request these from the Age Scotland Helpline: 0800 12 44 222.