Living with dementia

Everyday living

Although dementia is a much-feared diagnosis, with good support, the right information and good quality care it is possible to live well.

People with dementia say they want to be treated as normally as possible, to continue with interests and social contact, and to stay independent for as long as possible. Everyone is different. However, people living with dementia have suggested that some or all of the following can help people to stay in control of their lives.

  • Keep up with interests and friends and tell them what is going on
  • Join a group with other people with dementia. Many people find it helpful to meet and share experiences with others in a similar situation
  • Keep active. Go for regular walks or swims if you are able to
  • Hang a white board in the kitchen with daily reminders and keep things you are likely to lose in the same place
  • Have a newspaper delivered each day to keep your mind active and remind you of the date
  • Keep a diary
  • Tell your family you do not mind being reminded of things that you need to know
  • Think about using Alexa or a similar computerised prompt or support
  • See if your local voluntary sector organisation, in this case Beyond Dementia, would like you to help them in their work.
  • Connect with other people living with dementia for peer support and conversation. After all they are the experts!

Planning ahead

If you have been given a diagnosis of dementia there is a lot to think about. Once you and your family have had a chance to take in the diagnosis, it is a good idea to take stock and start to think about the future, what it may bring and what is important to you.

Beyond Dementia's dementia advisers can help with all of the below.

It is a good idea to:

Find out as much as you can about your type of dementia and its likely progress.

See if there is a clinical trial which you may be able to take part in.

Complete a 'This is Me' document to help other professionals know about your preferences in the future.

Find out about any financial benefits you and close family might be entitled to.

Make a more detailed Life Story, as a picture board, photo album or online, and ask family members to contribute. It may spark ideas for ongoing projects or trips you'd like to complete. Think about the music you enjoy and set up your own personal playlists that you know you will enjoy listening to in the future.

Gather information about services that can help to maintain independence and maintain a good quality of life – it is a good idea to know what is available locally before you need to use it. If you live in Wiltshire our dementia advisers can help with practical services and support for family carers.

Put your financial and legal affairs in order. Talk to a solicitor about setting up Lasting Powers of Attorney so that trusted relatives or others can help manage your affairs, including health and welfare aspects. Make a Will if you have not already made one.

If you drive, you will need to inform the DVLA and insurance company of your diagnosis, but it does not necessarily mean you have to give up driving straight away.

Think about technology. Some people living with dementia find online assistants like Alexa really helpful. It's not for everyone but now might be a good time to find out if it would help you - especially if you have a family member to get you started.

How family can help

Each person with dementia will have different needs, abilities and preferences but there are some useful general tips for anyone supporting someone with dementia. Try to:

Focus on what the person with dementia can do, rather than what they cannot

Allow more time for the brain to process information

Encourage the person with dementia to keep up with hobbies and interests they have enjoyed in the past

Find meaningful activities that are enjoyable and allow the person to gain a sense of achievement.

Keep things normal as far as possible - if the person with dementia has always taken the lead in an area of life, continue to include them in decision-making in that area for as long as possible

Don't test a failing memory, or do anything that might make someone feel stupid e.g., for forgetting something or being unable to do something they would normally do easily

'Feelings are more important than facts'

Remember that feelings are more important than facts. Resist the temptation to correct someone who is obviously living in a different reality. Instead:

Be friendly and a good listener

Body language can be as important as words. A smile, eye contact, and often touch, is the key to effective communication

Use simple words and short sentences, and stick to one topic at a time

Avoid asking questions that test memory. Stick to the here and now, or if there is time for a longer conversation, ask about a person's early life.

Finding out as much as you can about a person's past life can give you ideas for good conversation starters - it may be easier for people to talk about times in their life from long ago.

Supporting someone with dementia from a distance

If you are not living close by you can still offer support. Try to keep in touch as much as possible with the person with dementia, and with more immediate family carers. They will need to know that you care and are there for them.

  • Ask what would be helpful, and the best way to keep in touch
  • Don't stop visiting, even if you think a relative won't remember that you have been there
  • When you visit, bring memory prompts such as photos or items from the past to share and talk about, but don't 'test' someone's memory
  • Bring grandchildren to visit. Even if the person isn't quite sure of the family connection, young children especially are usually very accepting and intergenerational bonds can be a great source of joy
  • Write letters or send cards if using the telephone is difficult
  • If the person uses Skype or another way of connecting keep doing that regularly at set times so it becomes a regular habit and something to look forward to
  • Think about connecting with a trusted neighbour if the person lives alone and is hard to reach
  • Help with online shopping from afar
  • Consider setting up an online assistant such as Alexa which can be helpful for some people living with dementia
  • Compile a memory book or musical playlist for an older relative
  • Become a Dementia Friend so you have more understanding what your relative or friend may be experiencing.

Learn more about dementia

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