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 a dementia diagnosis. As a carer you might be unsure what you can do for the person you support and for yourself. Making a plan can help you and the person you support.

You might like planning and feel comfortable with the idea of making a plan. Or you might prefer to live in the moment. You and the person you support may have different views on planning. That’s OK – we are all different. Depending on your relationship, you might make your plans together or separately. As you read this, 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 and the person you support now, the steps you can take and how you can get there. It is about planning for now, and the coming months, not the long-term future.

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

Your life plan for this year is a ‘to-do’ list of things that you, the person you support and your family want to do. It 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.

Encouraging the person you support to make their own life plan for this year can help them stay in control and have purpose. It also helps you and healthcare professionals to understand what the person wants and help them to get the help and support they need as they move forward with dementia.

Start with things that are important to you

Your goals are the things that you want to do this year. These can be little 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 visit my daughter

Keep working

Look after my granddaughter at the weekend

Decorate my house

Keep dad from feeling lonely and relying on my company

Take 10 minutes every day to have a cup of coffee

The person you support can also use the My Life Plan Worksheet to help them to think about what is important to them too.

Start your own dementia toolkit

Clicking here will open the toolkit information page where you can learn how to create your own dementia toolkit.

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 your life day to day, changes in your family or social life, financial changes, or other things. As you put your life plan for this year into action, you may come across more barriers.

For example:

Important to me or goals for a meaningful life | How dementia, caring or other things get in the way

Go to visit my daughter

I’m worried about leaving dad alone at home

If dad comes with me, I am worried he might struggle with the long car journey and overnight stay

Keep working

I am worried I will struggle to pay my mortgage if I work less hours, or have to give up work

I am worried I won’t be able to help dad enough if I am working full time

Keep dad from feeling lonely and relying on my company

I rarely have any time to myself

I need to make sure dad has other company

Work out the 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 for this year.

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

Talking through your life plan for this year with family or friends.

Discussing your life plan for this year with your doctor, dementia nurse, or support worker. You could ask for a dementia care plan, to complement your life plan. Find out more in Plan services for support

Important to me or goals for a meaningful life | How dementia, caring or other issues get in the way | To-do strategies

Go to Cardiff to visit my daughter

I’m worried about leaving dad alone at home

If dad comes with me, I am worried he might struggle with the long car journey and overnight stay

Talk to my daughter about coming to visit

Look into getting the train instead. Get prices for cheap rail tickets and look into a senior rail card

Ask my husband to come with us

Ask my husband and dad’s neighbour if they could help out with dad for a day or two.

Make sure dad’s home is safely set up for him. See Managing symptoms at home.

Keep working

I am worried I will struggle to pay the bills if I work less hours or have to give up work

I am worried I won’t be able to help dad enough if I am working full time

Talk to my boss about helping dad. See Talking about dementia

Check with the HR department if they have a flexible working scheme. See Talking about dementia.

See if I am eligible for any benefits as dad’s carer. See Plan services for support.

Ask dad what he thinks about going to the local day centre once a week

Keep dad from feeling lonely and relying on my company

I rarely have any time to myself

I need to make sure dad has other company

Take dad to the local dementia café

Ask other family to ring or call in to visit dad more regularly. He gets particularly lonely on a Sunday evening

Encourage dad to go and play dominoes at the club on a Tuesday with his old friends

Ask dad what he thinks about getting someone to come and spend time with him a couple of hours a week

Put your life plan for this year into action

Once you have your life plan for this year, 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

Supporting someone with dementia can change your relationships with the person or others around you. You, the person or other people might feel awkward or uncomfortable talking about dementia, or about your relationship. Talking about dementia and support, is often part of moving forwards with dementia.

Here are some suggestions for ways to approach difficult conversations with the person you support, and 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.

Find out more helpful hints and tips talking about dementia.

Also read Managing how others treat you and the person you support for ideas to talk about dementia with doctors and other health professionals about how they can support your visit

Here are some of the tips:

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

Be clear about the treatment or services you want such as “I would like a referral to occupational therapy” or questions like “How likely is it that my wife will lose her driver’s licence?”.

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. Not everyone is offered a plan so you might need to ask your doctor. You can find out about care plans in the NHS Dementia guide.

Your life plan for this year can be part of your care plan. Many people with dementia are not routinely given a plan, so you may need to ask.

Make a plan

Start by writing down the things which are important to you and the person you support. Then think about the things that get in the way of these plans. Next write down the steps you might take to do the things you want to do

Talk to family and friends

Talk to family and friends about your goals and plans