Life after diagnosis

After you receive a diagnosis of dementia you may have many mixed feelings. It is common to feel angry, depressed, worried, sad, guilty, alone or frustrated. You may feel relieved that there is a medical reason behind the changes.

"I had an illness. I wasn't having a breakdown" - I'm Told I Have Dementia, Alzheimer's Society (UK) booklet.

These feelings are normal but there are many things that you can do that will help you to make life easier and more enjoyable, both now and in the future. It is important to remember that any changes are not going to happen suddenly. You will need time to adjust your lifestyle and to find help when you need it.

"Though you may need to build a whole new life in the slow lane, you don't need to be resigned to inevitable decline, lack of empathy and judgement. You can be a full participant in life - there are many options and possibilities ahead for you", Looking after yourself, workshop session for people with dementia, Christine Bryden, Australia & Morris Friedell, USA.

You are not alone in facing dementia. Here are some tips that other people with dementia have found useful:

  • Be positive. Concentrate on the things you can do instead of things that have become too difficult
  • Keep a sense of humour. It really does help you get by
  • Rebuild your self confidence, as many people lose it when diagnosed. You will find it returning when you see how many things you can still do
  • Be honest about how you feel about your diagnosis and allow other family members to do the same
  • Tell people that you have a memory problem and don't be embarrassed to ask them to repeat or explain things, as they may have already told you several times
  • Don't be afraid of asking for help and taking it
  • Don't feel you have to rush things. Allow more time than you perhaps need. Concentrating on what you are doing helps some people
  • Do difficult tasks during the times of the day when you normally feel best
  • Arrange for others to help you with tasks that are too difficult
  • Avoid over-stimulation. Too much noise and activity can create anxiety and confusion.
  • If you get frustrated when things are not going well, blame the illness, not yourself
  • Write things down. Make lists of what you need to do, keep a diary and get into the habit of checking it regularly; make notes of where things are. A weekly diary up on the wall can be useful
  • Carry a "cheat sheet" with you - with your personal details (not including your address) and the name of a person who can be contacted that knows you and their phone number
  • Make a routine for yourself. You may find it easier to keep track if you have a regular way of doing things and a particular time to do them
  • Decide where to keep important things like money, keys and glasses. Put them in the same place every time. Keep a note of where they are so that you can find them
  • Put labels on cupboards and drawers to remember where things are
  • Place helpful telephone numbers by the phone where you can see them or get a telephone that allows you to programme people's names and telephone numbers
  • If you are taking medication, ask your doctor/ nurse/ pharmacist/ Alzheimer association/ carer about help with remembering to take it
  • Arranging for a friend to phone and tell you when things are happening, like a "talking diary" can be useful
  • Getting a newspaper is an ideal way of keeping in touch with events, keeping track of the day of the week and meeting people. If you can't manage to go and buy a newspaper you may be able to have one delivered by a newsagent or a neighbour
  • Take care of yourself - caring for your body is important. Eat well, exercise regularly and make sure you take any medicines you are prescribed
  • Take care of your mental health. Make sure that you have someone to talk to about your feelings about the illness. If you are depressed or have other worrying feelings or thoughts your doctor and Alzheimer association may be able to help
  • Keep up your social life. See your friends and keep going out. If a friend seems to find it hard to know what to say to you, don't let them drift away. Explain that you still need to see them, even if it is awkward for them at first
  • Keep up the skills that you still have and work with your family or doctor to modify activities to your changing abilities
  • Continue with your hobbies and you may have time to take up those you always wanted to try but didn't have the time
  • Share educational information on dementia with your relatives and friends. Invite them to attend educational programmes/ support groups with you
  • These are just a few tips that can help you manage to live with dementia. Dementia affects people in different ways and each person will find their own approach to dealing with the changes that occur.

Contact the Alzheimer association in your country for more information, advice and help

Dementia Alliance International (DAI) also offer online support groups for people living with dementia around the world, providing a source of advice, friendship and understanding from others with the condition. Support groups are exclusively for people living with dementia, who are members of DAI.

Becoming a member of DAI is free, by contacting the organisation on their website.

Other resources