Living with dementia Planning ahead - alzheimers.org.uk · Alzheimer’s Society National Dementia Helpline on 0300 222 1122. The service does not offer legal advice. 6 Living with

Living with dementia Planning ahead

Living with dementia – Planning ahead 3

For more information visit alzheimers.org.uk

However, thinking ahead is a good thing to do. It can help you prepare for a time when it may be difficult for you to make decisions for yourself.

Making plans can also help your family and friends. They can act to support your wishes because you have made it clear to them what you would prefer.

The information in this booklet applies to people living in England and Wales. For more details about the laws and rules in Northern Ireland see Alzheimer’s Society factsheet NI472, Enduring Power of Attorney and Controllership.

When you have been diagnosed with dementia you may already be dealing with changes that you did not expect. It can be even more difficult to think about the future.



How you can plan ahead

There are a few different ways that the law can help you plan for the future.

Lasting Powers of Attorney (LPA) A Lasting Power of Attorney is a legal document that gives an adult the authority to make decisions for another adult. Even if you have not thought of creating an LPA before, it is important to think about how this can help in the future. Having an LPA will make it possible for someone you choose to make certain decisions for you should the time come when you are not able to make them for yourself.

There are two types of LPA: one covering property and financial affairs (eg bills, bank accounts, selling property) and the other health and welfare (eg day-to-day care and treatment). For more information on LPAs see Alzheimer’s Society factsheet 472, Lasting Powers of Attorney.

If you don’t have access to the internet, Alzheimer’s Society offers a Lasting Power of Attorney Digital Assistance Service to help people create and register Lasting Powers of Attorney. It is also available to anyone who feels they don’t have the skills or confidence to use a computer to complete the forms themselves. Forms are completed on your behalf by one of our trained volunteers using an online tool created by the government. You can access the service by contacting Alzheimer’s Society National Dementia Helpline on 0300 222 1122. The service does not offer legal advice.

Living with dementia – Planning ahead6

Call the National Dementia Helpline on 0300 222 1122

Wills One preparation that many of us make for the future is to write a will. A will is a legal document that states who your possessions, property or assets should go to when you die.

Planning for a funeral It has become more common to plan and even pay for a funeral in advance. The advantages of doing this include being able to plan the funeral that you would like. It can also make it easier for your family and friends to arrange the details. Undertakers or funeral service companies should be able to provide you with more information about funeral planning.

Advance decision to refuse treatment Another way of planning for the future is to make an advance decision. This sets out your wishes concerning medical treatments that you may not wish to receive in certain situations, if you become ill. For example, you may decide against having a blood transfusion, or you may not want to be resuscitated in certain circumstances.

Any statement you make about your wish to refuse certain treatments must be followed by health professionals (if applicable), if you were unable to make the decision for yourself. For more information and a template advance decision form see Alzheimer’s Society factsheet 463, Advance decisions and advance statements.

‘ Nothing keeps you from planning your own funeral yourself, from choosing poems and music to stipulating whether it should be traditional or humanist.’ Carer of a person with dementia



Advance statementAn advance statement is a document that lists your general wishes and preferences for your care in the future. This can be anything from information about your favourite foods, hobbies and interests, to where you would like to live in the future. You may also like to include music you like or a list of your favourite songs/films.

It also gives you somewhere to record more difficult options. This could be, for example, your preferences for dying at home or in a hospital. The document can be really helpful for family and those caring for you as it tells them about your wishes.

Advance statements are not legally binding, but if future decisions are made on your behalf, any advance statement must be taken into account. If a decision is made that goes against an advance statement, there has to be a very good reason behind it. For example, someone who states that they wish to stay in their own home may need certain medical treatment that can only be provided in hospital. This would be a good enough reason to move them to receive the treatment.

‘ I’ve made an advance decision and placed it in a sealed envelope.’

Person with dementia



‘ I have no idea what my mam’s wishes might be. It’s not something that she has ever mentioned. We never thought that this would happen to us so nothing like that was ever raised as a subject. Maybe that’s where we went wrong.’

Daughter of a person with dementia

Template advance statementOn the following page, you will find a template of an advance statement. It shows ideas for recording your likes, dislikes and preferences on a number of topics. You can fill in those that are relevant to you, cross sections out or add other preferences or wishes on extra pages if necessary.

Think about talking this over with family and friends when completing this. It will be useful for them and others involved in your care to know where it is kept. You can always make changes to your advance statement if you change your mind in the future.



My future wishes and preferences

Contact details

Name

Address

Telephone

Email

Date of birth

Advance decision to refuse treatment

I have made an advance decision to refuse treatment, and this is kept

(eg a copy is with my GP, a copy is kept in the document drawer in the kitchen)



Lasting Powers of Attorney (LPA)

I have made an LPA and my attorneys (those I have chosen to make decisions for me if I cannot) are:

LPA for health and welfare

Name

Contact details

Name

Contact details

Name

Contact details



In addition to my attorneys I would like the following people to be involved in decisions about my care

Name

Relationship

Contact details (Telephone/email)

Name

Relationship

Contact details (Telephone/email)

(Add in additional pages if needed)

‘ I think it’s entirely sensible to forward plan… I would start with making a will and granting LPA.’ Person with dementia



Future choices about my care

If I need additional care and support in the future I would like to live

(eg in my own home, move in with family, move into a care home that is near my family)

If I do need to move to a new home in the future I would like it to include the following

(eg a garden, my own bedroom/bathroom, there are no pets in the residence, I can keep my pet)

These are my views and wishes about who will deliver my care

(eg care to be only from someone of the same gender as me, not from my children or other relative)



I have the following religious/spiritual beliefs

I like to wear the following clothing

I would not like to wear

My other preferences about my personal care include the following

(eg I prefer a bath to a shower, I only like to wash my hair twice a week, I like to wear makeup every day. Continue on an additional sheet if needed).



Hobbies and daily activities

LikesThere are a number of hobbies and activities that I enjoy and would like to continue with in the future. They are

DislikesThere are a number of activities that I do not enjoy. They are

My favourite…TV programme/s is/are

Type/s of music is/are

Radio programme/s is/are

My least favouriteTV programme/s is/are



Type/s of music is/are

Radio programme/s is/are

Daily routineI usually get up at

I usually have breakfast at

I usually have lunch at

I usually have my dinner/tea at

I usually go to bed at

My usual bedtime routine is

(eg I have a cup of tea and a biscuit before bed, I watch the news in bed, I read before going to sleep, I bath/shower before bed).

I would like my bedroom to be laid out in a certain way

(eg I like my bed to be facing the window, I want a table with a lamp next to the bed)



Food and drink

LikesI like the following food and drink

DislikesI dislike the following food and drink

AllergiesI am allergic to

BreakfastFor breakfast I like to eat

and I like to drink

LunchFor lunch I like to eat

and I like to drink



Dinner/teaFor dinner I like to eat

and I like to drink

SnacksFor snacks I like to eat

and I like to drink

My favouriteDrink is

Meal is

Treat is

‘ I’ve documented my funeral wishes...my children are aware of this and know exactly where the file is.’ Person with dementia



My finances

If someone were to manage my money in the future there are a number of things I would want them to do.

GiftsI would want the following monetary gifts to be given

eg £10 to be given to my grandchildren at Christmas, £50 to be given to my children on their birthdays)

Charitable donationsI would like the following charitable donations to be given

OtherI would also like my money spent/distributed in the following way

(eg for me to always have a certain amount of money for items that I may need, for my money to be similarly spent on things I bought in the past)



My possessions

If I move home I want the following items with me

(eg photographs, furniture, jewellery)

I want the following items to be sent to

(eg jewellery, photographs and albums to a particular relative/s)



Checklist

Below is a checklist of things you may wish to do after reading this booklet.

Make a Lasting Power of Attorney so you know that the person(s) you trust will make decisions on your behalf if you are not able to. See Alzheimer’s Society factsheet 472, Lasting Powers of Attorney for more information. Contact the Alzheimer’s Society National Dementia Helpline if you wish to use the LPA Digital Assistance Service.

Make or update your will.

Consider creating an advance decision to refuse treatment. For further information and a template form see Alzheimer’s Society factsheet 463, Advance decisions and advance statements.

Fill in the relevant parts of the advance statement template in this booklet and let your family and friends know where you keep it so they are aware of your wishes.



Add to the statement any further wishes, thoughts and preferences that you would like people to know about you. You can attach as many additional pages as you wish.

Think about planning for your funeral, or tell those closest to you of your wishes.

Consider registering as an organ donor if you would like to be one.

‘ The more I can get in place now... the less stressful it will be when the time comes.’

Carer of a person with dementia



Other useful organisations

Office of the Public Guardian (OPG)PO Box 16185BirminghamB2 2WHT 0300 456 0300E [email protected] W www.gov.uk/government/organisations/office-of-the-public-guardian

The OPG supports and promotes decision-making for those who lack capacity or would like to plan for their future within the framework of the Mental Capacity Act 2005.

This publication has been reviewed by people affected by dementia and health and social care professionals. A full list of sources is available on request.

© Alzheimer’s Society, 2016. All rights reserved. Except for personal use, no part of this work may be distributed, reproduced, downloaded, transmitted or stored in any form without the written permission of Alzheimer’s Society.

Last reviewed: August 2016Next review due: August 2019

Registered charity no. 296645. A company limited by guarantee and registered in England no. 2115499. Alzheimer’s Society operates in England, Wales and Northern Ireland.

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Alzheimer’s Society is the UK’s leading support and research charity for people with dementia, their families and carers. We provide information and support to people with any form of dementia and their carers through our publications, National Dementia Helpline, website, and more than 3,000 local services. We campaign for better quality of life for people with dementia and greater understanding of dementia. We also fund an innovative programme of medical and social research into the cause, cure and prevention of dementia and the care people receive.

If you have any concerns about Alzheimer’s disease or any other form of dementia, visit alzheimers.org.uk or call the Alzheimer’s Society National Dementia Helpline on 0300 222 1122. (Interpreters are available in any language. Calls may be recorded or monitored for training and evaluation purposes.)

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Living with dementia Planning ahead - alzheimers.org.uk · Alzheimer’s Society National Dementia Helpline on 0300 222 1122. The service does not offer legal advice. 6 Living with