Advanced care planning: Planning for the future

Dementia service: Planning for the future

Worried about having dementia? Things to consider

Being told that you may have dementia can be a scary thing, but there are a lot of good things to share and discuss as well as some things that you can do to plan for the future. In many ways, everyone should think through these things, but at the time of diagnosis it is a good idea to revisit important decisions.

Living well with dementia

First of all, remember that many people live very well with dementia. For some it can be a time of extra support and friendship from family and friends. For others, with support, living with dementia can be better and easier than it was before they knew what was causing them problems. Many people live happily with dementia and make many new friends and supportive relationships as a result of their dementia. Many people in care homes also live well and happily. While we hear a lot about those who suffer and struggle with dementia we often hear a lot less about those who live well with it.

Treatments early on

Especially early on, medications and other support and treatments can make a real difference to people with dementia - improving memory and maintaining ability. Often enough these treatments will carry on working much later on in the illness.

Action: Why not talk to your family/carers/friends and ask them to make sure that you carry on getting effective treatments for as long as possible?

Support later on

Later on, an important aim of care is to increase your comfort and to reduce any distress should it occur. Sometimes this will be done with medicines, and at other times with care and support. But there is a huge amount of expertise that can help you at this time.

Action: Talk to your family/friends/carers and ask them to keep an eye on your progress through your illness. If you should experience times of distress, you may want to ask them to be more worried about reducing the distress than the avoidance of all medications etc. You may find it useful to write that down.

If it becomes difficult to make decisions

Later on, you are likely to reach a point where you find it hard to decide for yourself. That may not matter too much, as your family and carers can carry on supporting the doctors, nurses and social services in providing the care you need. You may be able to write down your preferences. But remember that you do not know how you will be later on, so it is best not to write things that are too specific. Doing so may risk asking for things that are not helpful.

Managing your money

We all have to manage our money and bills, and this may become difficult in the future. If you are able to, you can sign a lasting Power of Attorney. By doing this, you can appoint someone to manage your money for you when it is more difficult to manage complex decisions about money for yourself. You can get the forms to do this from https://www.gov.uk/government/collections/lasting-power-of-attorney-forms.

Remember to choose someone you really trust to act on your behalf.

Action: Think about who you would want to manage your money for you, and fill in the form to enable this to be put in place when you cannot manage your money any more. Do this as soon as you can.

Decisions about health and welfare

The same applies to decisions about your health and welfare. It is very sensible to find someone whom you trust to make decisions for you about your care needs. If you are able to, you can sign a lasting Power of Attorney to Planning for the future appoint someone to consent to treatment on your behalf should you be unable to do this yourself. This can help doctors and nurses and also make care better for you. You can get the forms too from www.gov.uk - search ‘lasting power of attorney’.

Action: Think about who you would want to make decisions about your health and welfare for you, and fill in the form to enable them to do this on your behalf should you find this too difficult in the future. Do this as soon as you can.

Thinking about what you would like in the future

The key thing therefore is to say what you would like to happen to help you in the future.

  • Where would you prefer to live?
  • Who would you like to manage your money and make healthcare and welfare decisions about you?
  • Do you have any other preferences?

Advance refusals

There may also be some things that you specifically do not want to happen. For example, you may wish to think about heart resuscitation or treatment in intensive care should you become very physically unwell.

If you do, then you can complete an Advance Decision to refuse treatment. But remember that there may be risks with this too. If you refuse all treatment, then you may find that you may not get all the treatment you need, so it is better to make a general statement of your wishes which a family, carer or friend can then interpret for you at a later stage. You could also cover this in a health and welfare Power of Attorney as described above.

Advance decisions to refuse treatment forms can be found here: http://www.helpthehospices.org.uk/mca/resources/ADRT.pdf

Action: Consider making an Advance Decision to refuse treatment, but think also about the risks that this may pose.

Helping others by helping with research

The good news is that a lot of research in dementia is helping to make the illness less of a problem for many people. You may be able to help us with studies in the future. Any research would be carefully designed and approved by a Research Ethics Committee and so it should be something with which you can help without worrying.

Action: If you would like to help in future research projects, please fill in the attached form found here.

Support with Advanced Care Planning

Greenwich and Bexley Community Hospice have volunteers who will help people who live in Greenwich, Bexley and Bromley with advanced care planning.

Greenwich & Bexley Community Hospice
185 Bostall Hill
Abbey Wood
London
SE2 0GB

T: 020 8312 2244
F: 020 8312 4344
E: info@gbch.org.uk

St Christopher’s Hospice offer support and advice for people with advanced illness and their carers.

St Christopher’s Bromley
Caritas House
Tregony Road
Orpington
Kent
BR6 9XA
T: 01689 825755
E: info@stchristophers.org.uk

St Christopher’s
switchboard
T: 020 8768 4500

51-59 Lawrie Park Road
London
SE26 6DZ
E: info@stchristophers.org.uk