Living with dementia magazine June 2011

It's quite natural for people to avoid thinking about the end of their lives but for people with dementia, there are clear benefits to planning ahead.

Planning ahead for a 'good death' is not at the forefront of many people's minds. Questions such as where do you want to die? How do you want to be cared for when you are approaching the end of your life and what do you want to happen after you have died? are not commonly asked or discussed.

But thinking ahead about the type of treatment and care you would want has numerous benefits. It puts people with dementia more in control of their lives, reduces stress on families and carers later down the line and increases the chances of having a 'good death'.

Alzheimer's Society is a member of the Dying Matters Coalition, which was set up by the National Council for Palliative Care (NCPC) in 2009 to promote public awareness of dying, death and bereavement. Working together, members of this Coalition are encouraging people to talk about their wishes towards the end of their lives, including where they want to die and their funeral plans with friends, family and loved ones. The aim is to make 'a good death' the norm.

Peter Ashley is an Alzheimer's Society Ambassador living with dementia with Lewy bodies and is also a member of the Dying Matters Coalition. He says,

'People are scared. They don't want to talk about dying. They think of today, not tomorrow. Thinking about what's going to happen later when you lose your capacity can be a disincentive to planning ahead. But if people can overcome these problems they might be able to see the merit in it.'

Research commissioned by the Dying Matters Coalition for Dying Matters Awareness Week in May found that more than three-quarters of people think it is part of a health professional's job to talk to them about where they would like to be cared for when dying and where they would like to die.

Next month, the NCPC will publish a new booklet called Difficult conversations. This is aimed at professionals and will encourage them to open up conversations about end of life issues with people with dementia. The Society is also working in partnership with the NCPC to develop training on end of life dementia care.

Starting a conversation about end of life care is never easy, but some of the subjects people may need to talk about include:

•    the type of care someone would like towards the end of their life
•     where they'd like to die
•     whether they want to be resuscitated or not
•     funeral arrangements
•     care of dependants
•     what they'd like people to know before they die.

Practical thinking

As a firm believer in the importance of quality of life and making his own decisions, Peter Ashley has taken steps to plan for his future. He says,

'The first big problem for people with dementia is coming to terms with the condition. The second is ensuring you have a will in place and thirdly, thinking about delegating your rights and responsibilities to a another trusted party, most probably your nearest and dearest. This isn't the sort of thing I particularly wanted to think about, especially after the trauma of a diagnosis, but it helped to think objectively.

'I asked myself, 'What do I really have to do?' I needed a Power of Attorney so that when I lose my competence, the person who acts for me will be the person I've chosen and will carry out my wishes. I also wanted to make an advance decision which sets out how I want people to look after me during the period between diagnosis and end of life. My preferences are now recorded for the time when I don't have capacity to turn around and tell someone, 'I don't want that.'

'The risks of not planning ahead are enormous. If you don't have a Power of Attorney carers, despite their good intentions, might assume responsibility for your life prematurely. If people start taking away from someone decisions they would normally take, they are impacting on that person's health by saying it is worse than it actually is. In doing so carers diminish the life of that person massively.'

Where to start

You can read our factsheets online Enduring power of attorney and lasting powers of attorney (472), Financial and legal affairs (467) and Advance decision (463) or call 01628 529240 to order.

The Dying Matters Coalition website - www.dyingmatters.org.uk - has plenty of guidance on how to start conversations and information about things to consider when planning ahead. Alternatively, call 08000 21 44 66. the Difficult Conversations

Planning for your future care is a guide for patients which explains advance care planning and outlines the different options available. See www.endoflifecareforadults.nhs.uk/publications/planningforyourfuturecare