Living with dementia Planning ahead

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1 Living with dementia Planning ahead

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3 Living with dementia Planning ahead 3 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. 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. For more information visit alzheimers.org.uk

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5 Living with dementia Planning ahead 5 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 The service does not offer legal advice. For more information visit alzheimers.org.uk

6 6 Living with dementia Planning ahead 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. Call the National Dementia Helpline on

7 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

8 8 Living with dementia Planning ahead Advance statement An 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 Call the National Dementia Helpline on

9 Living with dementia Planning ahead 9 Template advance statement On 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. 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 For more information visit alzheimers.org.uk

10 10 Living with dementia Planning ahead My future wishes and preferences Name Address Contact details Telephone 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) Call the National Dementia Helpline on

11 Living with dementia Planning ahead 11 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 For more information visit alzheimers.org.uk

12 12 Living with dementia Planning ahead In addition to my attorneys I would like the following people to be involved in decisions about my care Name Relationship Contact details (Telephone/ ) Name Relationship Contact details (Telephone/ ) (Add in additional pages if needed) Call the National Dementia Helpline on

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

14 14 Living with dementia Planning ahead 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) Call the National Dementia Helpline on

15 Living with dementia Planning ahead 15 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). For more information visit alzheimers.org.uk

16 16 Living with dementia Planning ahead Hobbies and daily activities Likes There are a number of hobbies and activities that I enjoy and would like to continue with in the future. They are Dislikes There 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 favourite TV programme/s is/are Call the National Dementia Helpline on

17 Living with dementia Planning ahead 17 Type/s of music is/are Radio programme/s is/are Daily routine I 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) For more information visit alzheimers.org.uk

18 18 Living with dementia Planning ahead Food and drink Likes I like the following food and drink Dislikes I dislike the following food and drink Allergies I am allergic to Breakfast For breakfast I like to eat and I like to drink Lunch For lunch I like to eat and I like to drink Call the National Dementia Helpline on

19 Living with dementia Planning ahead 19 Dinner/tea For dinner I like to eat and I like to drink Snacks For snacks I like to eat and I like to drink My favourite Drink is Meal is Treat is For more information visit alzheimers.org.uk

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

21 Living with dementia Planning ahead 21 My finances If someone were to manage my money in the future there are a number of things I would want them to do. Gifts I 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 donations I would like the following charitable donations to be given Other I 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) For more information visit alzheimers.org.uk

22 22 Living with dementia Planning ahead 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) Call the National Dementia Helpline on

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24 24 Living with dementia Planning ahead 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. Call the National Dementia Helpline on

25 Living with dementia Planning ahead 25 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 For more information visit alzheimers.org.uk

26 26 Living with dementia Planning ahead Other useful organisations Office of the Public Guardian (OPG) PO Box Birmingham B2 2WH T E W 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 Call the National Dementia Helpline on

27 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, 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 2016 Next review due: August 2019 Registered charity no A company limited by guarantee and registered in England no Alzheimer s Society operates in England, Wales and Northern Ireland.

28 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 (Interpreters are available in any language. Calls may be recorded or monitored for training and evaluation purposes.) Alzheimer s Society Devon House 58 St Katharine s Way London E1W 1LB alzheimers.org.uk Code 1510

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