Q&A - Dementia and Terminal Illness

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5 replies

Edited by MarkWilkin 6 years ago

In our latest community Q&A we're covering Dementia and Terminal Illness and we're joined by Colette from the Alzheimer's Society who'll be answering your questions. We'll be covering the issues and the complications that carers can face while looking after someone with dementia when they're nearing the end of life.

We're opening the thread over the weekend to gather all your questions and our host Colette will be answering them between 3-4:30pm on Tuesday 16th June. You can start posting them now and she'll answer them when she's online. Just scroll down to read her answers.

Colette works as a helpline adviser with the Alzheimer’s Society on their National Dementia Helpline, responding to phone calls, emails and live online chats. Her work includes providing information, support and guidance along with signposting to other organisations as appropriate.

She says “it is a privilege to do this work supporting carers, people with dementia and other interested parties. No one day is the same on the helpline and we all work to provide the best possible help to our callers”.

Thanks

farandaway1961 6 years ago

Hi there. I saw this on Twitter. One of my closest friends has had the bad news that their Father has dementia. I'm trying to offer as much support as possible, but I'm not sure if it's helping or not. Do you have any advice on what I can do to help out?

Colette 6 years ago

Edited by Colette 6 years ago

Hi there. I saw this on Twitter. One of my closest friends has had the bad news that their Father has dementia. I'm trying to offer as much support as possible, but I'm not sure if it's helping or not. Do you have any advice on what I can do to help out?

Hello there.

Thank you for posting and I’m sorry to hear about your friend’s Father’s diagnosis.

The time after diagnosis can be an emotional one, sometimes relief at someone’s symptoms being recognised so that support can be tailored to them and often mixed with sadness at the uncertainty of the future. I would always recommend being led by your friend regarding the support they might find helpful. It may be that you can provide practical support, information and/or a listening ear.

In addition to emotional support, people often find it helpful to learn a bit more about dementia and to have support to be able to help their loved one with dementia to discuss their wishes for their future. Because dementia is a progressive condition families generally find it helpful to discuss and plan for a time where someone will need support to manage their affairs and carry out their wishes.

Other people may prefer to start by putting support in place for example via local charity support, regular check-ups and discussions with the GP / consultant, and accessing local support from adult social services because it is social services who support the wellbeing of vulnerable adults.

We have published various factsheets on these areas which you can download from our website (at the following link: http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200137), and we’d be very glad to talk to you if you wanted to discuss the details some more. Our helpline can be contacted on 0800 222 11 22, email helpline@alzheimers.org.uk or use our live online advice service which is accessible via our website.

robby 6 years ago

Hi hope you can offer some advice, an old friend of mine who's got early stage dementia has also just been diagnosed with terminal cancer. Them and their family have been knocked for six by this and I'm trying to offer what help I can. W hat kind of things do they need to be thinking about now so that as things progress things aren't made worse by a lack of preparation? Thank you.

Colette 6 years ago

Edited by Colette 6 years ago

Hi hope you can offer some advice, an old friend of mine who's got early stage dementia has also just been diagnosed with terminal cancer. Them and their family have been knocked for six by this and I'm trying to offer what help I can. What kind of things do they need to be thinking about now so that as things progress things aren't made worse by a lack of preparation? Thank you.

Hello, thank you for your question. I’m sorry to hear about your friend’s dementia and cancer.

There are various different ways to plan ahead, from writing or updating a will to planning care and medical wishes and making provision for someone else to manage finances and healthcare decisions. Your friend should be as fully involved in these discussions as possible and family may need to pick the best time to discuss things with them because someone with dementia is typically more receptive at certain times than others.

Setting up lasting power of attorney (LPA) would mean your friend giving someone of their choice (an attorney) the power to make decisions on their behalf. On health and welfare matters drawing up and registering an LPA enables the attorney to make healthcare decisions along with choices about where someone lives when they longer has capacity to make decisions. Another LPA can be drawn up to enable your friend to have someone manage their money and property affairs. This LPA can be registered and used before someone loses capacity, to help someone manage their bills, bank accounts, etc.

It can be helpful for people to think about their wishes for the future regarding their future care in case there comes a time when they can’t make decisions for themselves. These wishes can be documented in an advance statement. It isn’t legally binding but should be looked when professionals are considering care arrangements and can cover all manner of things from food and drink preferences, spiritual and social wishes to where they would prefer to live, including discussing where they would like to spend their final days.

Future medical care wishes can also be planned for in advance via a document called an advanced decision which is legally binding if it’s been drawn up in a particular format. This gives the right to refuse specific medical treatment and should be drawn up in discussion with the GP.

We have factsheets on all these areas, available on our website at the following link: http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200137