5.1 Plan for now

Make a life plan for this year

“What’s next?”

Some people feel unsure about what they should or can do next after their dementia diagnosis. Making a life plan can help.

You might like planning and are comfortable with the idea of making a life plan. Or you might prefer to live in the moment. That’s OK – we are all different. As you read this article, you might find some useful ideas even if you don’t put your plan down on paper.

Writing a life plan for this year can help you work out what happens next. It helps you prioritise what is important for you now, the steps you can take and how you can get there.

This can help you stay in control and have purpose. It also helps the people who support you (family and friends, professionals) to understand what you want. It also means they can help achieve your plans.

Making a life plan for this year is about planning for now, and the coming months. It isn’t about planning for the long-term future.

It is flexible. As things change in your life, your plan might change too.

Your life plan is not a care plan. A care plan is something that health professionals and services write to provide treatment or support. A care plan includes the actions that health professionals and services do to support you.

Your life plan, is a ‘to-do’ list of things that you and your family want to do.

Start with things that are important to you

Your goals are the things that you want to do this year. These can be little things or big things but try to make them realistic. Start with one or two at first. If you can’t think of a anything, write down things that are important in your life. You might like to use the ‘my life plan’ worksheet.

Example: Things that are important to me

Go to Glasgow to visit my sister

Finish rebuilding the back shed

Keep fit enough to walk up and down the stairs

Keep driving

See my friends regularly

If you used the My Life Plan Worksheet in When dementia gets in the way of living a meaningful life you may’ve already thought about things that are meaningful to you, your goals, barriers and strategies for your life plan.

Work out what might stop you meeting your goals

Barriers are things which get in the way of meeting your goals. Examples might be how dementia affects you day to day, changes in your family or social life, financial changes, or other things. As you put your life plan into action, you may come across more barriers.

For example:

Important to me or goals for a meaningful life

How dementia or other things get in the way

Go to Glasgow to visit my sister

I might not be able to afford train tickets

I’m worried about getting lost or missing the train

Finish rebuilding the back shed

I might not be able to work out how to finish the back shed

My wife doesn’t want me working with power tools

Keep fit enough to walk up and down the stairs

I am losing strength in my legs and have problems with my balance

My family want to put a stair lift in

Keep driving

I might fail my driving test

I’m worried about having an accident

See my friends regularly

I find it hard to follow conversations

I’m not sure they enjoy my company anymore

Figure out next steps to meet your goals

You can work out next steps by:

Reading through or searching Forward with Dementia and choosing suggestions that make sense for you and add them to your life plan.

Reviewing any to-do items you’ve saved in your Forward with Dementia toolkit.

Talking through your life plan with family or friends.

Discussing your life plan with your doctor, dementia nurse, or support worker. You could ask for a dementia care plan, to complement your life plan.

Important to me or goals for a meaningful life

How dementia or other issues get in the way

To-do strategies

Go to Glasgow to visit my sister

I might not be able to afford train tickets

I’m worried about getting lost or missing my train

Talk to my sister about coming to visit

Get prices for cheap rail tickets and look into a senior rail card

Ask my daughter if she’ll come with me

Find out if the train company have extra support for people who have difficulties travelling alone

Finish rebuilding the back shed

I might not be able to work out how to finish the back shed

My wife doesn’t want me working with power tools

Write a timeline for work on the back shed, and decide if I can do it myself

Ask my nephew to help me

Talk to my wife about continuing to work with power tools, and ask the occupational therapist do a safety assessment

Talk about how I feel about hiring someone to finish the back shed for me

Keep fit enough to walk up and down the stairs

I am losing strength in my legs and have problems with my balance

My family want to install a stair lift

See a physiotherapist or about my walking

Ask the occupational therapist for a home safety assessment including my ability to climb the stairs.

Talk with family about how important it is to continue using the stairs as long as possible.

Keep driving

I might fail my driving test

I’m worried about having an accident

Decide if I want to keep driving, and if yes book in for a driving test

Read Managing Driving for suggestions about transport besides driving

Talk to my family about how to get to my weekly appointments if I do not drive

Apply for a free bus pass

Ask my friends if they can pick me up on the way to the club

See my friends regularly

I find it hard to follow conversations

I’m not sure they enjoy my company anymore.

Talk to my friends about how much I enjoy meeting them at the club

Tell my friends not to worry if I lose track during conversations

Arrange to meet up in small groups so I can keep focused.

Phone at least one friend a week for a chat

Read Managing with difficulties when out for tips on having conversations when I am out

See a speech therapist for tips following conversations.

Put your life plan into action

Once you have your life plan, put it into action. Things won’t always go to plan, but don’t let that put you off. You can make changes to your plan along the way. You may need the support of family or friends to put your plans into action.

Talking about dementia

Having dementia can change your relationships with the people around you. Other people might feel awkward or uncomfortable talking about dementia, or about your relationship. Talking about your dementia and your thoughts on being supported, is often part of moving forwards with dementia. Find out helpful hints and tips talking to your family and friends about dementia in Telling others about your dementia diagnosis.

Here are some suggestions for ways to approach difficult conversations with family and friends:

Talk to people face to face

Talk to people by phone

Write them a letter, and then talk

Write down the points you want to make, so you don’t forget anything

Talk to people separately

Have a family meeting

Ask someone you trust to be there as you talk to other people

Talk about what your goals are, how you feel, and how you want to be supported. Find some helpful hints in Manage how others treat you.

Try not to bring up negative things from the past, focus on now and the future.

For ideas to talk about dementia with doctors and other health professionals about how they can support you visit Manage how others treat you. Here are some tips:

Write down what you want to say, so you don’t forget anything

Be clear about the treatment or services you want (e.g. “I would like a referral to occupational therapy”) or questions (“How likely is it that I’ll lose my driver’s licence?”)

If you feel like your doctor, health professional or service provider is not listening to you, or not respecting your wishes, ask to speak to someone else, such as another doctor in the GP practice.

Everyone with a diagnosis of dementia is entitled to a care plan. This should include the things you can do to stay well and get support. You can find out about care plans in the NHS Dementia guide. Your life plan can be part of your care plan. Many people with dementia are not routinely given a plan, so you may need to ask your doctor or other healthcare professional.

Take action

Make your own plan
Start by writing down the things which are important to you. Then think about what stops you from doing these. Next write down the steps you might take to do the things you want to

Talk to family and friends
Talk to family and friends about your goals and plans

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