How to tackle dementia stigma
According to Alzheimer's UK, 850,000 people in the UK have dementia, but by 2025 this number is expected to exceed 1 million. The condition has a profound effect on everyday life, both for the person with dementia and for their nearest and dearest.
Many people think of dementia as solely being about forgetfulness. While memory loss is one of the main symptoms, dementia is a term describing a number of disorders that cause a loss of brain function, which usually progressively worsens over time.
"In the beginning, people might exhibit a number of early signs, such as losing interest in day-to-day activities and becoming apathetic," explains Dr Jane Mullins, dementia nurse specialist and author of the book Finding the Light in Dementia. "On top of that, a person's mood might change; they might become easily upset or frustrated and seem to lose confidence."
Often, Mullins, says, it's these emotional and mood-related symptoms that people notice first. Alongside these, a person will commonly have language difficulties - for example, struggling to find the right words - and begin forgetting recent events, names and faces. They may become more repetitive - for example, repeating a question or statement after a very short interval - and misplace items or put them in odd places.
"We all lose things now and again, but with dementia it's the regularity with which these things happen that is difficult to deal with," Mullins comments.
'Things slow down'
Commonly, people affected will have noticed themselves that something is happening that just isn't right. This was the case with 91-year-old Salaam Kaffash from North London, who was diagnosed with Alzheimer's disease in March 2016. He had been worried about his declining memory for some years before he eventually visited his GP.
"He was aware that he was beginning to forget things, and he was quite bothered by it," explains Salaam's wife of 52 years, Gill, who's 79. "I was more bothered by the change in his cognitive abilities - it was that slowing down of capacity to think and absorb information.
"There was one incident where he got really confused about a tube journey we had to take. That was very unusual, because he used to know which carriage to get in to come out at the right exit on all sorts of routes, but on this occasion he couldn't seem to work out where to go."
Of all the many and varied symptoms of dementia, disorientation to time and place commonly causes the most anxiety, prompting people to tell their loved-one that they're concerned about their health.
Mullins advises that, if you're worried someone close to you might have dementia, you should broach the topic very sensitively. "It's not an easy conversation to have, and how you go about it will depend on the relationship you have with the person - everybody has to gauge that for themselves," she says.
"The first thing is to slow down, stand back and try to put yourself in their shoes and imagine if someone was approaching you about changes in your memory, your thinking or your mood - how would you feel about it? Empathy helps a lot."
It's important to choose a time when neither of you is tired, and a quiet place with no distractions. Mullins also recommends knowing what you're going to say beforehand, and avoiding the word 'dementia'. Instead, simply tell the person that you're worried because you've noticed changes in their memory or mood, for example, and ask if they have noticed too.
"Crucially, make sure you're prepared for any reaction," Mullins comments. "The person might be relieved that you've brought it up, but if they're not ready to face up to what's happening, they might be quite defensive." She adds that you may need to have the conversation several times.
In the first instance the person should visit their GP, who will try to establish the degree of brain function decline, and importantly, rule out other causes of the symptoms the person is experiencing. These might include depression, vitamin B12 deficiency, thyroid disease, or unstable blood glucose in people with diabetes. If the GP suspects dementia, they will make a referral to a specialist memory clinic for more extensive tests.
Getting confirmation of dementia can be a very difficult blow for everyone, but for Gill, her husband's diagnosis came as a relief.
"It meant we could both get help," she comments. "Salaam’s illness is developing all the time, but it helps to have support. We still do things together, like yoga and visiting family, and I also go off and do things on my own."
Gill goes to an aqua fitness class every week and takes part in a history club at the local community centre. She says it's also important that she gets plenty of sleep and keeps as healthy as possible.
Mullins points out that remaining as active as possible is key, both for the person with dementia and for their caregiver - and having some respite is equally important.
"Try to include friends and family so the person with dementia doesn't only rely on that one person," she suggests. "Getting involved with community initiatives can also be a good way to get out and about, and to enjoy activities both together and separately."
Organisations like Alzheimer's Society and the Dementia Engagement and Empowerment Project (DEEP), which brings together groups of people with dementia from across the UK, provide information about local initiatives all over the UK.
"In my experience working with people with dementia and their families, the people who cope better are those who are more socially active," Mullins says. "So I would recommend being proactive in seeking out what's around in your local area."