Planning ahead as a person with dementia

Starting to think ahead

We know it can be difficult to think and talk about the future. There is no right or wrong way to do this. Some people find knowing what will happen reassuring, while others would rather not think about it.  

After you've read this information, you might also find it helpful to spend some time alone to gather your thoughts about what you want to happen in the future. When you feel ready you can share these thoughts with people close to you. If they know what you want to happen in the future, they can support your wishes.

Step one: Getting your paperwork in order

A practical way to start is to go through all your financial and personal paperwork and put it in order so that you can access it easily. This might include information about:

• your bank accounts, pension, tax, any benefits you receive and insurance policies 
• the property you live in and any other property you own
• any medication you are taking and hospital clinics you may attend
• any gifts you have made
• your Will if you have made one.

You might find it helpful to ask a friend or family member you trust to help you with this. Getting your paperwork organised will also be helpful for them or anyone else who looks after your affairs in the future.

Choosing someone to make decisions in your best interests 

There may come a time when you need someone to make decisions for you. This could be someone managing your finances or making medical decisions on your behalf. You can choose who you appoint to act for you – the ‘attorney’. They might be a partner, family member or a friend and you can decide what decisions they can make for you. They have to make all decisions in your best interests.

It's a good idea to start thinking about making an power of attorney as soon as you can, to make sure your wishes are carried out in the future.

Making a will

A will is a legal document that says who should receive the things you own when you die – such as your property, savings or valuables. It is sensible for everyone to make one. If you already have a will, you may want to update it. You need to have mental capacity to make or update a will so it is a good idea to think about it as soon as you can.  

Advanced care planning

You might not want to talk about how you want to be cared for in the future, particularly at the end of your life. Many people find this difficult to talk about. But there are ways you can tell other people about what you want for your care and treatment in the future.

Advance decisions and advance statements are two ways of planning for how you are cared for and treated in the future. 

Planning care with a professional

You can also plan for your future care and treatment jointly with health and social care professionals. Some doctors may encourage you to discuss this or you could make an appointment with your GP. They might suggest that you complete a form which records your preferences for the future such as a ‘Preferred Priorities for Care’ form which is a type of advance statement. The ‘ReSPECT’ form is also becoming more common for use in an emergency. This is completed by you and a doctor together.  

How you choose to plan for your future care is up to you. You can do one, some or all of these things. Some people decide not to do any of them. If that’s your choice, thinking about these things can still be helpful and you can still share your wants for the future. Think about having a conversation with your family or close friends and tell them what you want to happen so they can try to make sure your wishes are respected. 

Thinking about where you live

There may come a time when you struggle more than you used to with day-to-day tasks like cooking or washing. You may not feel safe in your own home anymore. Or you may find it harder to get out and about, and this may mean you feel increasingly isolated and lonely – particularly if you live alone.

There may be ways that you can get support at home, so ask your local authority or trust for a care needs assessment. But, though it might be hard to accept, there may come a time when you want or need to move to somewhere else so that you can get the support you need.

Housing options

It can be a good idea to think about housing options before you need to move. This means that you will know what is available when the time comes. It might also feel less like a leap into the unknown if you have already thought about your options and found somewhere you would feel comfortable moving to.

You won’t necessarily have to move into a nursing or care home if you can no longer live in your own home. There are a range of housing options that you could consider. Some of these will give you more independence than others, depending on the amount of support you need.

• Sheltered housing – these are usually self-contained flats which are part of a scheme, sometimes called “retirement flats”. They may have a warden and a 24-hour emergency alarm system. Some may have communal facilities. The level of support will vary depending on the scheme but they don't offer personal care. Sheltered housing schemes usually expect residents to have a certain level of independence.
• Extra care housing –  also known as assisted living or supported living, this is similar to sheltered housing but it provides extra support. This will vary depending on the scheme but might include assistance with personal care, meals, domestic support, and community activities.
• Shared lives – this is a scheme where someone who needs care and support moves in with, or is supported by, an approved Shared Lives carer.
• Care homes – these are either residential care homes (providing support and assistance with personal care) or nursing homes (providing nursing care as well). The type of home that will be most suitable will depend on your needs.

It can help to talk to someone you trust about options and what you would like to happen in the future. That may help them if decisions about where you live have to be made in future when you can’t make them yourself. You can include your preferences about where you live in an advance statement if you make one. For more information on housing options contact the Elderly Accommodation Counsel.

Tips to support you

When you feel like the time is right, you can use this information to start planning and preparing for the future. It's important to remember that you don’t have to tackle everything in one sitting, there might be topics that you’d rather not discuss. Only address what you feel ready to.

Do, however. bear in mind that if you decide to take some of the steps mentioned here you need to have mental capacity to do so. Because dementia gets worse over time it makes sense to start as soon as you can. 

It can help to know support is available to you, from friends and family as well as from professionals. The conversation might feel emotional or difficult, but each person is there to support your wishes and help you prepare for the future so be honest about your wishes.