10 things a person with dementia wants you to know

Unbelievably, the voices of people with dementia can be underrepresented, even in health and social care circles. Keith Oliver, who was diagnosed with Alzheimer’s at 55, lists 10 things he wishes everyone knew about people with dementia.

Regular conversations are important

It doesn’t matter if the person with dementia isn’t as articulate as they used to be, they will still benefit from having a conversation and the reassurance of knowing that they have someone to talk to. Even if they don’t remember the conversation later on, regular interaction with different people will still make a difference. While peace and quiet may also be important from time to time, simply putting a person with dementia alone in front of the TV too often is not ideal. Regular social contact is not only important for improving mood, it could also slow down progression of the disease.

Dementia is more than just losing your memory

Dementia can affect many aspects of someone’s quality of life and isn’t just about struggling to remember things – it can cause mood changes, affect a person’s judgement and personality (they can become confused, suspicious or angry for instance) and can also result in increased falls as a person becomes less able to judge widths and distances. Retired headteacher Keith Oliver, who has Alzheimer’s disease, said: “Please understand that dementia isn’t just about memory loss. It’s a much more complex disease than that and it has a great impact upon the person and those close to them.”

Following storylines can be challenging

For most of us, it can be relaxing to read a good book or watch a film. For a person with dementia, it can be frustrating as it is often a challenge to follow or remember a storyline. Keith Oliver said: “I’m reading a book at the moment and I can’t remember it but I’m determined to get to the end because that’s the challenge – the challenge is to finish this book and enjoy it.”

Social activities can make a real difference

Going out, meeting others, getting involved in local activities or community events can make a big difference to the wellbeing of the person with dementia, especially if they are usually quite sociable. Having someone to go out with can really help. “When I go to events, either my wife will come with me or a supporter will come with me,” explained Keith. “This gives me support, friendship and laughter at times.” ability for nuances and subtleties which at times can cause some grief because my wife will say something to me in humour and I don’t see the joke at all and take it very literally.”

Things can seem more black and white when you have dementia

You  might have a dry sense of humour and be used to cracking subtle jokes, or you might have shared a similar sense of humour with a person who now has dementia, but they may lose their ability to understand things in the same way. “Sense of humour is not as good,” revealed Keith. “I’ve lost the ability for nuances and subtleties which at times can cause some grief because my wife will say something to me in humour and I don’t see the joke at all and take it very literally.”

Dementia can affect moods and energy levels

A person with dementia is having to work harder than the average person to get things done or process information. This can be not only hugely frustrating but also mentally and physically draining. “Dementia does affect your mood and it makes you more tired as well,” said Keith. “You are pre-rehearsing stuff and you are having to work harder to get to the same place you would have got to quite easily before, so inevitably that affects your mood as well. I do get frustrated and frustration in some people leads to anger.” 

A person with dementia will detect your moods

If you are feeling low, tired or frustrated people with dementia will often pick up on how you are feeling, regardless of what you say or how polite you are. Carers can understandably become frustrated at the situation and the relentless nature of giving round-the-clock support. Keith said that people with dementia can often interpret this frustration as being directed at themselves, which can cause some of the tensions that often crop up among family members when one develops dementia.

Regular exercise can make all the difference

There is an increasing amount of research to say that exercise can help a person with dementia, both in terms of mood and also slowing down the progression of the disease. Plus it’s mentally stimulating and uplifting to be outside in the fresh air. “I walk most days and I’ve lost a bit of weight as well,” said Keith Oliver.

Everyone is different

Although we associate memory loss, confusion and disorientation with dementia, it’s also important to understand that every person with dementia is different. As such, everyone should be treated as an individual and not be put into the same bracket. “Everybody is unique,” explained Keith. “Don’t view everybody in the same way. My mother had Alzheimer’s but her situation was very different from mine.”

Dementia doesn’t just affect the elderly

Although it is more common in older people, there are over 40,000 people in the UK under the age of 65 with dementia. “It does affect an increasingly large number of people in the age group below 65,” revealed Keith. Alzheimer’s disease is the most common form of dementia in younger people.