4 ways to plan for the future when living with dementia

Planning for the future as a person living with dementia can sometimes be difficult to think about, but it ensures your wishes are followed. Here are four things to consider when planning for your future.

Making plans and sharing your wishes with your loved ones can be empowering for you. It will also be helpful for family and friends.

A report by Solicitors for the Elderly confirmed that too often people don’t take advantage of the legal tools available to plan ahead.

People with dementia may not know that they can plan in advance; they may believe family members can make decisions on their behalf if they ever cannot. Legally, this isn’t the case.

We recommend planning for your future as a way of ensuring that your wishes are followed. Make sure that those close to you and involved in your care are aware of any plans that you make.

Person living with dementia writing
Our dementia advisers are here for you.

Four things to consider when planning your future

1. Lasting powers of attorney

A Lasting power of attorney (LPA) allows you to give those you trust the power to make decisions for you. This is helpful if there is ever a time when you cannot make certain decisions yourself. There are two types of LPA; one is for health and welfare decisions, and the other is for financial decisions. Often people make the financial LPA but not the health and welfare one, but the two are equally important.

An LPA for health and welfare enables families to make decisions about care, treatment, and even where someone will live. Without this, families can still be consulted but professionals will make the decision. It is, of course, up to you whether you wish to make either LPA, but it’s important to consider the value in them both.

Alzheimer’s Society offers a digital assistance service to help people create and register LPA forms.

2. Advance decision to refuse treatment

Making an advance decision to refuse treatment (ADRT) sets out any wishes you have about certain medical treatments. You can specify procedures that you do not want to receive in the future.

For example, you may not want a blood transfusion or may not want to be resuscitated in certain circumstances. An ADRT must be followed by health professionals (where applicable) if you were unable to make the decision yourself. ADRTs need to be written down and must contain certain information.

We have a template form to help you create an advance decision to refuse treatment.

3. Advance statements

An advance statement enables you to write down your general wishes and preferences for your future care. This can include anything from your preferences on food, drink and hobbies to where you would like to live.

Advance statements are not legally binding, but must be taken into account if decisions are ever made for you in the future. To go against an advance statement there must be a good reason. You can make an advance statement verbally, but it is best to write it down.

Our booklet, Living with dementia: Planning ahead, provides more information on advance care planning.

4. Making or updating a Will

Another way to plan ahead is by making or updating a Will. This ensures that the people you want will inherit your possessions. Alzheimer’s Society has its own scheme that helps with the cost of making or updating your Will.

Learn more about our Will to remember scheme.

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Next steps

Living with dementia: Planning ahead

Download our booklet, Living with dementia: Planning ahead for more information on how to plan for your future. 

Download the booklet
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Just came across this and wanted to add that 3 years ago Cheshire also denied CHC to my Mum, who was living with dementia and could no longer walk after surgery on a broken hip. Mum was assessed against the care she was receiving at the time, rather than against a healthy independent individual. The family was left with top up fees and little choice about care homes as placement was based on affordability, rather than what Mum needed. Mum passed away in June 2017 and I still feel that I failed her when she was most vulnerable.

Would lke some information on dementia

Hi Lynn,

Thanks for getting in touch. Was there a particular topic you wanted information on?

We have lots of information available on our website, or if you would prefer to read printed materials you can order most of our publications for free. You can find out what publications we have available here: https://www.alzheimers.org.uk/get-support/publications-factsheets/publi…

If you'd prefer to talk to somebody, you may find it useful to call our helpline who can point you in the direction of the information you need. All the details for the helpline can be found here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline

Hope this is helpful,
Alzheimer's Society blog team

I have applied for lasting power of attorney for my mom ,her partner is in z care home on paliative care .have now been told I may need Power of Probate or Grant of Probate.Is this correct

Hi Helen, thanks for getting in touch.

It would be good to get a better understanding of your situation, as it's not completely clear from your message. In this case it would be best to talk with a Dementia Adviser. You can do this by emailing directly on [email protected] or call us on 0333 150 3456.

We are open seven days a week (9:00am to 8:00pm Monday – Wednesday, 9.00am to 5.00pm Thursday and Friday and 10:00am to 4:00pm weekends).

Hope this is helpful,
Alzheimer's Society blog team

This is really helpful legal advice but as the comments above suggest, it's just as important to think about how to pay for care. We've done research at the University of York on financial advice about paying for social care. We've turned the findings into short films, infographics and a leaflet, available at https://gettinginformed.net/ Worth a look if you're not sure where to turn next...

Peter...sorry but it does not appear to be there...or is it me? Bill

Peter...many thanks for your advice and I have accessed your website on a number of occasions for guidance.However,regarding Professional Contacts I have a query which it might be better to air other than on a blog...regards...Bill Burrows.

Bill - I can be contacted at the end of my website via the email address provided.

Regards. Peter

In my book and many,many others Alzeimer's is a disability and a Primary Health Need. Not so the Darlington Clinical Commissioning Group. Having been discharged after some consultation from the local hospital to full time care with a fractured leg in plaster following a fall and a diagnosis of advanced Alzeimer's my wife Catherine was refused CHC. Despite appeals and complaints the DCCG upheld their decision after five months of deliberations. The matter now goes to the North of England Regional CHC Independent Review Team...Bill Burrows.

Bill I am sorry to hear Darlington do not appear to accept Alzheimer's Disease as a "Primary Health Need". If this is true its disgraceful & they need to be shamed publically in my opinion. However the system of marking Assessments can easily be abused in order to ration NHS finances to the public.

My website provides advice on Professional Contacts via the Links page & I urge you to get all the help you can to get your Rights & Catherine the help required. All the details are on https://continuinghealthcare.wordpress.com/

Best wishes. Peter Garside

In addition to all these important things on which Professional Advice is required please don't forget Alzheimer's Disease, if presenting complex overall Health Needs, will qualify for NHS Continuing Health funding with no means testing necessary. This provides funding for all Health Care Needs including Respite Care for the Main Carer. People can remain in the comfort of their own homes with Carers visiting as required up to 24/7. If a Nursing Home is eventually necessary then NHS will pay the costs with no means testing.
Only Local Authority Social Care is subject to financial means testing, not NHS "Primary Health Needs" like Alzheimer's Disease.
Research how this can help you is available on my website written as a Memorial to my late Wife Pauline on https://continuinghealthcare.wordpress.com/
Plan ahead for the future is good advice. Best wishes. Peter Garside

We made our will about 4 yrs ago before my husband got dementia can i update it now weve been married 52 yrs its just that we missrd a family member out

Hello Pamela, thanks for getting in touch.

You can update or change your will any time you like and as many times as you like so long as you have the mental capacity to do so. Just make sure any new one specifically cancels out the last, which is why it is wise to use a solicitor when doing so.

Your update to the will may only require an amendment or a codicil – both of which you can use Will to Remember for. This is our will writing scheme, which gives you £150 off the cost of making or updating your will. Please visit wwww.alzheimers.org.uk/wills for information.

We hope this is helpful.

What about people that will not admit they have dementure even in the later stages.

Hello Terry, thanks very much for getting in touch.

If the person has not yet been diagnosed with dementia but you've noticed symptoms, or you are concerned about their memory, you should encourage them to see their GP. The GP can refer them for assessment to find out for certain the cause of the problems.

We have a page on our website that may be of interest: 'Concerned about someone else's memory problems?'

It includes things to think about before starting a conversation with that person and other useful information to help approach the subject of seeing the GP.

If you have further questions, we would recommend calling our National Dementia Helpline for advice - they're available on 0300 222 11 22 to provide support and information.

We hope this helps, Terry.

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