2.2 Managing how you feel about life with dementia

You are still you

You may worry about losing your sense of self because of your dementia.
You may worry that if you forget things about your life, you will no longer be yourself. Some people worry that if they can’t do things as well as they did before others will treat them differently.

You are still you.

You are not just defined by what you remember.
You are not just defined by how good you are at doing things.
We all change through life and can face challenges along the way. Managing these changes is a key part of all our lives. Throughout life you are likely to have faced big changes such as getting a job, having children, moving home, or losing a loved one. Being diagnosed with dementia is another big change to manage.

The core of who you are such as the foods or the music you like, your beliefs and the people you care for tend to stay the same. The things you do, your home and neighbourhood, and the people you spend time with, all help you be you.

Thinking more positively about dementia

People with dementia can think and talk negatively about themselves.
These thoughts are common but not right and stop people from moving forward with dementia. These negative thoughts can hold you back and stop you from taking part in life. They may also prevent other people from seeing the things you can continue to do. Read more about myths and stereotypes about dementia in Adapting to your dementia diagnosis.

Here are some suggestions to turn negative feelings into more positive emotions.

“I’m stupid because I have dementia”
When you are worried and think “My memory is worse because I have dementia”, it can be helpful to focus on things that you’re good at, not the dementia. For example, “I’ve got good common sense” or “I’m great at cooking”.

If you are having negative thoughts, write down three things you are good at. Put it somewhere you can see it, like the fridge door or as a bookmark to remind yourself of the things you do well.

“I’m useless because I have dementia”
If you are questioning how useful you are and feel “I’m less useful because I have dementia” focus on things that you do which are useful. “I make my grandchildren laugh”, “I read and enjoy books”, “I keep the garden weed-free”. You might like to write down three things you do that have meaning or purpose and put them on the fridge as a reminder.

“I’m a burden because I have dementia”
People around you might worry and care for you. They are unlikely to see you as a ‘burden’. You might also worry and care for others and might have done so for much of your life. Do you think your friends, spouse, or children are a burden?

When these thoughts occur, focus on the things that you do for yourself, or for someone else. These may be things like: “I make my wife tea every day” “I keep my shed organised” “I treat my friends when we have coffee”.
You might think that positive self-talk is a bit of nonsense and won’t work. However, there is scientific evidence that positive self-talk can help with mood. You can find out more here

Give it a go, it might make a difference!

Start your own dementia toolkit

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

Practice positive self-talk

‭You may feel down or anxious. One in three people with dementia have clinical depression or anxiety which means they have some or all of the feelings in this list and that they are there most of the time and impact on their life.

Feelings include:

Feeling low, down or sad

Constant worry or feeling stressed

Crying more than usual

Feeling tired a lot

Having trouble sleeping

Losing interest in things you used to enjoy

Brain changes related to dementia might cause depression or anxiety. Feeling this way may also be a reaction to being told you have dementia or to changes in your life because of dementia.

Find out more about talking therapies. Treatments can help with depression or anxiety. Talking therapies and counselling such as grief and loss counselling, or cognitive behaviour therapy (CBT) can help manage depression or anxiety. Read more about non-drug therapies to help with your dementia and feelings in Managing memory and thinking difficulties.

The NHS website has helpful advice for getting help to cope with feelings of grief and loss Get help with grief after bereavement or loss.
Research shows that these therapies can improve mood for people living with dementia.

You can get professional support for depression or anxiety:

Talk to your doctor, consultant at the memory clinic or practice nurse about how you are feeling. Your GP or consultant can refer you to a psychologist for cognitive behaviour therapy.

Ring the Alzheimer’s Society for advice on counselling services

You can also refer yourself for “talking therapies”. You can find a NHS psychological therapies service (called IAPT services) in your area.

Private psychologists are also available. Contact The British Association for Counselling and Psychotherapy to find more information on therapies in your area

Medications can also help with depression and anxiety, though they are not always effective in people with dementia. Talk to your doctor if you want to try medication to see if it will help.

The NHS also has some useful tips for boosting your mood.

Here are a list of other organisations who can offer advice and support to deal with depression and anxiety:

Dementia UK: Call 0800 888 66 78 or email direct@dementiauk.org

Samaritans: Call 116 123 or email jo@samaritans.org. Open 24 hours, 365 days a year

Age UK: Call 0800 169 2081Open 8am-7pm, 365 days a year

Mind: Call 0300 123 3393, email info@mind.org.uk or text 86463

Take action

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Practice positive self-talk

Write down 3 things you’re good at or you do for yourself or others. Put them on the fridge to remind you what you do well

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Telephone Dementia Connect

Dementia Advisers at Dementia Connect will listen and direct you to the right support services. Call free 0333 150 3456

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Talk to your doctor

Talk to your GP about how you are feeling and ask for a referral to a psychologist. You can also ask about whether medications might help you.

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