When you or a loved one has received a diagnosis of young onset dementia and are ready to take the next step, documenting your wishes and making arrangements can give you a sense of control. It’s best to be prepared in advance to make your wishes known. Documenting how you would like to be cared for and making practical arrangements for your future needs or those of a spouse or partner can be an important part of preparing ahead for when your circumstances change.


Support to make decisions about your future needs

Making decisions about your future needs can be emotionally difficult and can take time to consider options and get advice. Discussing your wishes with family and friends can be an important step but we also recommend getting advice from organisations such as the Alzheimer’s Society, a solicitor or a specialist independent financial adviser. The following organisations can help guide you through the process and how to document your wishes.

The Alzheimer’s Society has produced a guide to Financial and Legal Affairs which provides useful information and practical advice for getting help and making arrangements for your future needs. You can email them at enquiries@alzheimers.org.uk or call their national dementia advice line on 0300 222 11 22.

The Citizens Advice Bureau provides free confidential advice and details of local organisations that can support you through the decision making process. On their contacts page you can also search for your local CAB office for a face to face meeting. In some circumstances they may be able to arrange a home visit. You can call their national helpline on 03444 111 444.

The Law Society has a searchable register of legal practitioners and solicitors by specialism and area. They don’t offer advice but can help you find a solicitor in your area.

The Money Advice Service is a free and impartial services created by government. It provides detailed guidance on a range of financial topics including writing a will, financing care and money management. You can email them at enquiries@moneyadviceservice.org.uk or call their national helpline on 0300 500 5000.

Unbiased provides a range of advice on money matters and includes a search facility for regulated and independent financial advisers (IFAs), solicitors and accountants in your area. You can email them at adviser@unbiased.co.uk or call the adviser customer services on 0330 1000 755.


Your will

Your will is used to define what you want to happen to your assets when you die. Wills are particularly important if you have assets that you want to leave to someone or own shared assets with a spouse or partner. Ensuring you have a will in place, or update an existing will is always recommended.  Advice and support when writing a will is available from a number or organisations including the Citizens Advice Bureau, solicitors or independent financial advisers.

Your local Citizens Advice Bureau team can offer advice and help. You can search for your local branch on the Citizens Advice Bureau website.  They offer a wide range of advice about organisations that offer support when writing a will and where to get independent financial advice. Their helpline is 03454 04 05 06

The Advice Now website provides national guidance for a range of topics from money and tax to benefits and housing.

The Unbiased website provides a search facility for professional services. You can search for a local solicitor, accountant or financial adviser in your area. All listed providers are impartial and independent of product providers.

The Money Advice Service (MAS) was set up by government to offer free and impartial advice. The Money Advice Line opening hours are Monday to Friday, 8am to 8pm and Saturday, 9am to 1pm on 0300 500 5000. You can also email them at enquiries@moneyadviceservice.org.uk.


Discussing and documenting you future care preferences and wishes

It can be very upsetting talking about what may happen to you in future with family and friends, but its important to discuss your future wishes so that you receive the care you want. Making your wishes known in advance can also remove the burden from family members who may be asked to make these decisions on your behalf when you are no longer able to do so.

You may want to document your wishes; like the hospital care you wish to receive or where you want to live if you are no longer able to be cared for at home.  These are called advanced statements or advanced decisions and are made at a time when you have mental capacity and can describe or document your wishes and understand the implication of the decisions.

What are advanced statements and advanced decisions?

An ‘advanced statement’ can be a verbal or written statement or agreement about your wishes for your future care or treatment. A statement can express your preferences to ensure your values, lifestyle choices or religious views are considered by the people who will make decisions on your behalf. You could include the people who you wish to be consulted by health and care professionals who make decisions about your care, like your family or partner. Advance statements are not legally binding and your preferences may not be followed if they are contrary to clinical care or your best interests.

An ‘advanced decision’ is usually a legally binding record of your care wishes and must be followed by doctors and care professionals. This could include your wish to refuse some medical interventions or treatments; like what care you wish to receive or refuse if you are diagnosed with a terminal disease so that you do not have to receive treatment you do not want.

Its important that you and your family fully understand the implication of the decisions, when these may come into effect and what this means for you if you have chosen to receive or refuse care and are no longer able to make decisions for yourself.

An advanced decision needs to be clearly documented and describe the circumstances when the decision is to be implemented on your behalf, be signed and witnessed and copies should be provided to an appointee (the person acting for you under a Lasting Power of Attorney) and your GP and solicitor.

The Alzheimer’s Society have created a guide to Financial and Legal Concerns to explain about advanced decisions, care planing and documenting your wishes.


Lasting Power of Attorney

A Lasting Power of Attorney (LPA) is used to make your wishes known about how you want your affairs to be managed when you are no longer able to make decisions yourself and allows someone to act on your behalf. This can include arranging your future care needs and management of your financial affairs and assets such as your home, paying care fees and bills.

A Lasting Power of Attorney can be set up at any time but must be done when you have ‘mental capacity’ and are able to make the decision yourself. It can be more costly and difficult to act on someones behalf when the time comes, if there is no LPA in place.

An LPA registers your wishes with the Office of the Public Guardian and formally recognizes an appointee who you have chosen to manage financial or care decisions on your behalf – you can choose to have more than one person acting as an appointee. An appointee can be a family member, trusted friend or an organisation acting on your behalf and working in your best interests.

There are two types of LPA for dealing with your property and financial affairs and for health and welfare decisions. You can choose to register an appointee to act on your behalf for both types of LPAs or have different appointees for each one.

You can find out more about Lasting Power of Attorney and making arrangements for your future needs on gov.uk.


Things to consider when making your wishes known

Always seek independent professional advice before making advanced decisions.


Ensure you talk to your family and professionals about the decisions you are making and that you fully understand the implications.


Clearly describe your wishes in writing and check that it is signed and witnessed and includes everything that’s important to you. Review these decisions regularly to ensure they are still relevant.



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