Living with Dementia

Even if you are half expecting it, a diagnosis of dementia can be a shock and the early weeks will be an unsettling time.

However it does not mean that life has to change dramatically overnight.  People with dementia can and should continue to enjoy social contact and should be encouraged to continue with their interests.

Living Well with Dementia

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

Everyone's experience of dementia is different and will depend on:

  • Their own personality and life experiences
  • The type of dementia and how far it has progressed
  • The social environment, ie, the way the people around them behave

Over the past ten years or so people have been diagnosed earlier and it has been more possible to talk to people in these earlier stages to find out from them what it is like to live with the condition. In this way people with dementia have contributed to a greater understanding of their predicament, and we have learned that people experience a range of feelings and emotions. These may include fear and anger, resignation, and isolation.

The book Understanding Alzheimer's Disease and other Dementias published by the British Medical Association, gives the following tips for people whose memory is failing, suggested by people with dementia themselves.

  • Keep a diary
  • 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
  • Tell your family you do not mind being reminded of things that you need to know
  • Keep up your interests and your friends and tell them what is going on
  • Join a group with other people with dementia
  • See if your local voluntary sector organsation, in this case Alzheimer's Support, would like you to help them in their work

If you are supporting or caring for a person with dementia a good rule of thumb is to focus on what the person with dementia can do, rather than what they cannot, and to allow more time for the brain to process information. Don't test a failing memory, or do anything that might make someone feel stupid eg, for forgetting something or being unable to do something they would normally do easily. Keep things normal - 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.

There are many websites with ideas for activities which people with dementia may enjoy. See our links pages for details

Planning ahead

It is a good idea to take some time to put your affairs in order and to tell family and friends about what is happening.

Areas to consider include:

  • Talking to family members and friends about the diagnosis and what it could mean for everyone
  • Getting as much information as possible on the type of dementia and its likely progress.  See our Links for useful websites and Alzheimer’s Society factsheets which cover a wide range of topics
  • Seeing if there is a clinical trial which you may be able to take part in.
  • Finding out as much as you can 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. Alzheimer’s Support can help with practical services like day clubs, home and community support and activity and social groups, but can also offer training courses for carers, carers’ groups and counselling. See our Services pages for details
  • Talking to a solicitor about setting up Lasting Powers of Attorney and making a will
  • Making a Life Story, as a picture board, photo album or even online.
  • 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

TheSpecal Approach

Some people find the SPECAL approach to dementia care very helpful. The approach is outlined in the book Contented Dementia (available from www.amazon.co.uk ). Families (and professional carers) wanting to know more or to attend a training session are should get in touch with Penny Garner and her team at Burford in Oxfordshire www.specal.co.uk 

Here are some links about Dementia you may find useful:

What if I have dementia (Link to http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=162)

More dementia factsheets (Link to http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200137 )

Wiltshire Voices film project. This film by Wiltshire Council provides an insight into the lives, hopes and challenges faced by people living with dementia and their families here in Wiltshire.

How you can help

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Don't Face Dementia Alone

Other organisations that can help

Working Together:

Alzheimer's Society / Leading the fight against dementia Carers in Wiltshire Avon and Wiltshire / Mental Health Partnership NHS Trust Wiltshire Council / Where everybody matters