Alzheimer's Society - Help a Family Living With Dementia

08/07/2010

The Alzheimer's Society has issued ten ideas that you can use to help a family living with dementia - encompassing the effect that having a family member with dementia can have on everyone that loves and lives with them and their condition. The following ten points give good guidelines on how to make things easier for the whole family.

Treat The Person With Respect and Dignity - when someone you know has dementia, it's easy to focus on the dementia instead of the individual. But it is important to remember that someone with dementia is still a unique and valuable person, just like anyone else. When someone finds that their mental abilities are declining they often feel very vulnerable, so it is very important to help them feel confident and valued, and to encourage them to achieve small things for themselves. Above all, try to be positive. Let the person know that they are important to you.

'It's nice to be treated like everybody else and not being separated - and being as involved in life as you always were. I don't want to be different.' John, living with dementia

Be a good listener - When someone has dementia, or is supporting a loved one with dementia, it can really help them to talk things through. You can help by making time

to listen - even if this is just with a short weekly phone call to see how they are. Ask thoughtful questions, and give the person time to explore their feelings. Listen carefully, rather than jumping in with suggestions: you may find that the support they need is not what you had expected. It can be tempting to offer practical solutions, but often people just need a chance to say how they feel. Try to be supportive and accepting, and not to judge. If you are listening to someone with dementia, think about how things appear from their perspective. If they are anxious about something, rather than telling them that their fears are irrational, try to imagine how that must feel for them.

'You need to let the person think. The answers don't come as quickly as they used to.' Lesley, living with dementia

Be a good communicator - People with dementia can become confused at times, so it's important to communicate clearly with them. Try to speak calmly, waiting for signs that the person has understood what you have said. Communicating isn't just about talking. Non-verbal communication is very important too, especially for someone who is losing their language skills. So, pay attention to your body language. Make sure you look the person in the eye, talk to them at eye level, and use physical contact, such as a pat on the hand, to offer reassurance. Your tone of voice is important too. Even if someone doesn't understand the words you are using, they may sense if you are irritated, stressed or anxious. If you can convey a sense of warmth and reassurance, they will be more relaxed and content.

'Because I forget quite quickly what people have said, I tend to get off track. I like it if the person brings me back to the main point of the conversation. But the most important thing is to look me in the eye.' John, living with dementia

Remember that the little things can mean a lot - The idea of supporting someone whose life is affected by dementia can feel overwhelming. Some people worry about making a commitment that they can't keep, or getting involved in a situation that they can't handle. Some find it so difficult that they lose touch completely with their friends and family. But it doesn't need to be like that. Doing something that seems very small can make a big difference to someone living with dementia. Dropping in for a cup of tea, or helping them organise their photo album, can make them feel that someone cares.

Stay in touch - People with dementia and their loved ones can easily become isolated as dementia progresses. Old friends can lose touch over time, but when someone's life is affected by dementia this can happen simply because people don't know how to behave with them any more. If it's not practical to visit the person, why not give them a ring, or write a letter or email? If you're really pushed for time, drop them a postcard or send a quick text message just to let them know you're thinking about them. Hearing from someone briefly and frequently is better than receiving a long letter twice a year, so don't put it off and keep in touch.

'People do tend to keep in touch with me, and it's highly appreciated. They'll keep phoning even though I forget to return the calls. They understand, because they know my position.' John, living with dementia

Offer practical help - Two thirds of people with dementia live at home. Even those who are independent may welcome help with some tasks. Carers may be glad of help too - not least because they're often short of time. An easy way to help out is to offer practical support. Help the person tackle something on the 'to do list' - cut the grass, put the rubbish out, cook a meal or run an errand. For some people remaining independent is important and it can give them a sense of great pride. So it's important to find a balance between being insistent and knowing when to step back. If someone is fiercely independent, try to think of a two-person job that they might struggle with on their own.

'I wanted to make a lawn at the front, but it would need digging and planting grass, and that's too much for me now. If someone wanted to help me with that, I wouldn't mind at all'. Phillip, living with dementia

Organise a treat - Almost everyone enjoys a special treat now and again. It can be something to look forward to and a welcome break from everyday routine. If you are planning a treat for the person with dementia, think about what they liked to do before the illness, and whether you need to adapt an activity to their current situation. You could go for a drink in their local, have a picnic in the park, or take a trip to the seaside. Or you may prefer to spend time indoors, watching an old film or the football. If you'd like to arrange a treat for a carer of someone with dementia, ask whether they would like the person to come too. If they would prefer to join you alone, help them think through who will look after their loved one so they can relax and enjoy planning the day with you.

'It would be nice to do something different. I'm easily pleased! But I'd want to get out of the house. I'd like to go to the shops or a dance club - somewhere you're meeting people and doing stuff.' Lesley, living with dementia

Help different family members in different ways - It is not only the person with dementia who is affected by this condition - it also has an impact on anyone who is close to them. Some family members may dedicate a lot of time to caring responsibilities, and have little time to do practical things like tidying the house, let alone reading a book or having a soak in the bath. Filling in as a carer from time to time will offer welcome relief. Others, including children and grandchildren, may be affected emotionally. They may be upset about the changes in their loved one, frustrated by disruptions to their home life, distressed that they cannot be more involved, or concerned that they may develop dementia themselves. Offer them a chance to talk things through and express what they are feeling.

Find out more about dementia - The more you know about dementia, the more comfortable you will feel spending time with the person with dementia or their loved ones. Dementia can make people behave differently, but once you understand that these changes are part of the illness, you will find it much easier to take them in your stride. If you feel you don't know enough about dementia, it's easy to find out more. Their website has lots of information about dementia and the ways it can affect people and their loved ones. Alternatively you can phone The Alzheimer's Society helplin on 0845 300 0336.

'When I've told people I've got dementia, you can see them looking as if I might turn into some strange creature. But it's not that I'm going to hurt people or anything - just that I can't remember things.' Lesley, living with dementia

Direct people to Alzheimer's Society for more help and support - they run many different types of services that can help a family living with dementia from helplines to support groups, and from befriending services to social activities. If you know someone whose life is touched by dementia, ask them if they have contacted the Alzheimer's Society yet. If they haven't, give them their details, or find out about their services in your area and pass on the information. The Alzheimer's Society support 30,000 people each week in England, Wales and Northern Ireland, so they are well equipped to make a difference.

'Alzheimer's Society is important. You get to know what dementia is all about, and then you can pass that on to other people. I'd recommend it to anybody who wants to know about dementia.' Phillip, living with dementia