A to Z of Dementia

There are over 920,000 people in the UK who are living with dementia. We’ve put together this A to Z to share some advice that you might find useful if you’re caring for someone.

Alzheimer’s. Whereas dementia is a blanket term for a severe decline in mental ability, Alzheimer’s is a specific degenerative brain disease and the most common type of dementia.

Behaviour. When a person loses their ability to negotiate the world around them, it can make them upset, anxious or even  aggressive. Although it’s hard, don’t take it personally. It’s the disease that’s making behave this way, so try to be patient.

Calm. When you’re calm it helps the person you’re caring for feel safe and secure. If a situation gets tense, take deep breaths and count to ten. It’s simple but it can really help.

Don’t try to reason or argue with a person with dementia. The way they see the world is different now. Asking to ‘go home’ is very common, even if they are home. Instead of correcting them, try to reassure them with phrases like, ‘you’re safe here’.

Exercise. When we say exercise, we’re really talking about getting them moving. (But only if it’s safe for them to do so – your health practitioner can advise.) Short walks or dancing to their favourite songs can get the blood flowing and be something they’ll really enjoy.

Focus on feelings. It can be difficult to get to the bottom of why your loved-one is behaving in a certain way. Pacing is common and often a sign of anxiety or agitation. Instead of telling them to stop, ask if they are feeling worried and give them the reassurance they need.

Grief. Although the person is still with you, you can go through the same emotions of sadness, frustration and anger that you would with grief. It doesn’t mean you’re not coping, it just means you’re human. Share what you’re feeling with friends, family and see about getting extra help. If you find your mood is consistently low, talk to your GP.

Help. Engage them by asking for help around the home. Perhaps they could help you set the table or put away some clothes. Maybe even a little dusting or sweeping. It doesn’t matter if they can’t do it properly. The object isn’t to have a sparkly house, but to keep the person occupied. And it’s likely to give them a more fulfilling day.

Interests. If their condition isn’t too advanced, why not try to engage them in new activities? Try painting, baking or helping them to do a simple jigsaw. Again, it’s not about the finished result but time well spent.

Just to go with the flow. The person may believe that someone close to them who has died is still alive. This can be really upsetting for you too. Instead of correcting them, try to move the conversation on.

Keep it simple. It’s good to chat, but it’s likely to be difficult for the person to follow what you’re saying. If you’re asking a question, just ask one thing at a time.

Listen. If they’re anxious about something it might manifest itself in challenging behaviours. This can be their way of trying to tell you something isn’t right. Maybe they’re hungry, or thirty, or in pain. Listen to what their behaviour is trying to tell you.  

Music has power. Even people with advanced dementia have been seen to respond positively when old favourites are played. If they’re still able to speak, get them to sing along. It can bring real joy to the day.

Never. Although times can be tough, you should never raise your voice or tell the person off. They don’t understand what they’re doing, so won’t understand why you’re being angry. All it will do is make them more agitated. Be calm and try to comfort them.

Outlets for energy.  Imagine how frustrating it would be if you couldn’t do the things you love doing. You’d feel tense and agitated, right? So think of ways you can help them get that release. Try a change of scene. Go for a walk. Take a trip in the car (but make sure they’re able to wear a seatbelt).

Prepare for the road ahead. When you’ve looked after your loved one it can be hard passing over that care to someone else. None of us is superhuman, so it’s important to reach out for help if you need it. They may eventually need round the clock care, so give yourself time to weigh up your options and perhaps look at gradually introducing different support. 

Quiet. Always try to keep their environment as calm as possible. Be mindful of how loud the TV, radio or other people’s voices are. Constant noise can be distressing, so give them periods of quiet.

Routine. Even though the person might have lost any sense of time, they can get a feel for when things happen. Keeping to a routine – getting-up, going to bed, meals and snacks – can give them a sense of  familiarity which will make them feel more at ease.

Sundowning. Late afternoon and early evening can be especially stressful times. You might notice your loved-one is more agitated, restless or confused. This could be caused by day going into night and their body-clock thinking that it’s time to sleep. Try to distract them with things they like – a cup of tea, light snack, or their favourite songs.

Triggers. There are some things we wouldn’t give a second thought to, but which can be really distressing for someone with dementia. Make sure lights aren’t too bright. Take any mirrors from their room or areas where they spend time, as they may not register their reflection as themselves, but as another person. Get rid of rugs, as not only are they a trip hazard, any change in flooring can be confusing.

Urinary Tract Infection. If you notice a sudden change in behaviour, it could be linked to something physical going on. The discomfort of a UTI can make the person more irritable, confused or withdrawn than usual, so it’s worth reporting any changes to your health practitioner.

Value. Your loved-one may act differently, but that person you once knew is still in there. Needing to feel connected with other human beings doesn’t go away just because you have dementia. Remembering the person as they were can help you continue to have a relationship you’ll really value.

Words. Use positive, reassuring phrases whenever you can, especially when they’re agitated. Try to reassure them with phrases like: ‘You’re safe here’. ‘I’m here’. ‘You’ll feel better soon’.

X marks the spot. Mark important times in their life with a Memory Book. If they’re in the early stages, perhaps they can help you collate and stick pictures and add captions. Their long-term memory will be much better; making new memories is where dementia strikes first. The book can serve as a really helpful way of talking to them about the past and who different people are.

You. The person you’re caring for can’t thank you for what you’re doing, so sometimes you’ll feel that what you’re doing is a thankless task. But what you’re doing is wonderful.  Keep reminding yourself of that.

Zzzzzz. Caring for someone is one of the most rewarding things a person can do. But it’s relentless and can be exhausting. Make sure you’re getting the rest you need and periods of respite whenever you can. To be able to look after them, you need to look after yourself, so don’t be afraid to ask for help.

We’re always here to answer any questions or provide whatever support you need whether it’s another pair of hands to help you through the day, respite care, or full time specialist live-in care. Please do get in touch if there’s anything we can do for you.

Call us on 0800 668 1234.

Email: enquiries@betterhealthcare.co.uk