When a family member has dementia

Lots of young people know someone with dementia. Often this will be a grandparent or older relative, or even a parent. Living with someone with dementia can be frustrating and sad – but there are ways to cope. The Mix spoke to the Alzheimer’s Society to find out how.

Can you still enjoy the same activities together?

If you live with someone with dementia it can be particularly difficult. You may have to care for your relative, and you may find your personal life is affected. You may feel frustrated, confused or angry.

What is dementia?

Dementia is a condition where the brain is affected by disease, leading to changes in memory, understanding or behaviour. There are over 100 different types of dementia, with Alzheimer’s disease being the most common.

You can’t catch dementia, and just because someone in your family has dementia, doesn’t necessarily mean you will get it when you’re older.

Dementia mostly affects people over the age of 65, but occasionally you can get it younger.

People with dementia can live well with the condition. They can still do the things they’ve always enjoyed, but might need to make some changes to the way they do them.

How does dementia affect people?

Every person with dementia is different so not everyone will have the same symptoms. Some of the ways in which dementia can affect people include:

• Forgetting things – particularly things that happened recently. Someone might remember things from a long time ago, but not remember what happened earlier in the day. You might also find that people repeat things a lot.
• Finding it hard to get words out or understand – sometimes people with dementia might struggle to find the right word for something or to follow conversations.
• Getting lost – people might not recognise places they know and get confused on the way to the shops or a relative’s house.
• Getting mixed up about dates and times – people with dementia might not know what day or year it is. They might get dressed in the middle of the night, or think they should be going to school or their job even though they haven’t been to school or work for a long time.
• Reacting strangely – someone might react differently to how you expect, like getting upset by things they used to find funny.

Even if someone with dementia acts differently, they are still the same person they’ve always been.

If you have a family member with dementia you might feel:

• Grief and sadness at what is happening to someone you love.
• Anxiety about what will happen to the person in the future.
• Fear, irritation or embarrassment, for example at unusual behaviour in front of other people.
• Boredom, for example with hearing the same stories and questions over and over again.
• Guilt for feeling these emotions.
• Confusion about ‘role reversal’ – having to be responsible for someone who used to be responsible for you.
• A sense of loss if your relative doesn’t seem to be the same person that they were, or because it isn’t possible to communicate with them in the same way anymore.
• A sense of uselessness or rejection because of an inability to help the person cope or ‘get better’.
• Anger or rejection if other family members are under pressure and seem to have less time for you than they had before.

Visiting someone with dementia

Sometimes it can feel hard to talk to people with dementia, as their behaviour can feel confusing or frustrating and you might not know what to say. It’s OK that you feel this way, but it’s important to try to maintain a relationship as it can be really rewarding for someone with dementia, and for you.

There are lots of things that people with dementia can do. You can help by thinking of activities you can do together before you visit them – this might make it easier when you get there.

Some ideas of what you can do:

• talk about the person’s past and their childhood
• look through old photos
• go for a walk
• listen to music together
• do some gardening
• hold hands
• make a memory box full of things that are important to the two of you
• make a video of old photos and film clips

Contact the Alzheimer’s Society for support

For more information on dementia, and how you can support someone affected, visit: www.alzheimers.org.uk/youngpeople

If you have concerns you can call the National Dementia Helpline on 0300 222 1122 or visit the Alzheimer’s Society forum: www.alzheimers.org.uk/talkingpoint.

Sign up to become a ‘Dementia Friend’ www.dementiafriends.org.uk – from telling friends about dementia to visiting someone you know who is living with it, every action counts.