Living with dementia in the family

Lots of young people have first-hand experience living with dementia. Often the person who has dementia will be a grandparent or older relative, or even a parent. This close connection makes it really difficult to cope sometimes. To help, The Mix spoke to the Alzheimer’s Society to find out how to support someone with dementia.

A group of young people are sitting on a table. They are discussing living with dementia. This is a wide-angle image.

If you live with someone with dementia it can be particularly difficult. You may have to provide care and support for your relative, which will affect your personal life. On an emotional level, you’ll probably feel frustrated, confused or angry. And that’s completely valid. It’s takes time to figure out ways to cope with your situation. We’ve got an article on how to cope as a young carer if you need extra support.

What is dementia?

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

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

Dementia mostly affects older people over the age of 65. But occasionally you can get it younger, this is generally a sign that the disease has been inherited.

It’s important to mention that people with dementia can live well with the condition. They can still do the things they’ve always enjoyed, with just a few changes to adapt to their new way of living.

What are the symptoms of dementia

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 thingsparticularly things that require short-term memory. For example, someone might remember things from a long time ago, but not remember what happened earlier that 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, meaning they could get confused on the way to the shops or a relative’s house.
  • Getting confused 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.

Although it can sometimes feel as though the person you love is not there any more, we promise they are. Even if someone with dementia acts differently, they are still the same person they’ve always been.

Coping with having dementia in the family 

If you’re living with dementia in the family 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 at unusual behaviour in front of other people.
  • Boredom at hearing the same stories and questions over and over again.
  • Guilt for feeling these emotions.
  • Confusion about ‘role reversal’ – you’re now caring for someone with dementia who, most likely, used to care for you
  • A sense of loss if your relative doesn’t seem to be the same person that they were, or because they can’t communicate in the same way they used to.
  • A sense of helplessness because of an inability to make the person feel better (on a medical level.)
  • Anger or rejection if other family members are under pressure and seem to have less time for you than they had before.

Whatever you’re feeling, it’s OK to let it out. Bottling up emotions will just lead to a massive overflow later on which won’t be healthy for anyone involved. This is why it’s really important to have a support network that you can vent to when times get tough.

Head to our page for young carers for support on looking after someone.

Visiting someone with dementia

Sometimes it can feel hard to talk to people living with dementia. Whether they’re in care homes or their home environment, seeing someone you love struggling is incredibly difficult.  Their behaviour can be confusing or frustrating and you might not know what to say. You don’t need to beat yourself up about it. Just try to maintain a relationship with them, as difficult as it is, because it can be really rewarding for the both of you.

How to support someone with dementia

How to support someone with dementia? The number one thing is to be there for them. Make sure you pay them a visit weekly and talk to them on the phone when you’re not with them. 

Other than that, you can also think of activities you can do together before you visit them. That way you’re ready to have some fun as soon as you get there.

Some ideas of what you can do:

  • Find some talking points 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

Moreover, it’s essential to collaborate with healthcare professionals to explore suitable medications and therapies tailored to the individual’s condition. Keeping an open line of communication with the person’s medical team can aid in adapting care plans as needed.

Additionally, consider incorporating cognitive-enhancing supplements into their routine, such as Mind Lab Pro, which has garnered positive reviews for its potential benefits in supporting brain health. If you’re interested in exploring ways to support cognitive function, you may want to look into a mind lab pro review to understand its potential benefits within the context of a dementia care plan. Always consult with healthcare professionals before introducing any new supplements to ensure they align with the individual’s overall care plan.

Remember, creating a supportive and compassionate environment, coupled with comprehensive dementia management strategies, contributes significantly to the well-being of those affected by this challenging condition.

Contact the Alzheimer’s Society for info on care and support regarding dementia

Head here for more information and advice on caring for someone with dementia.

You can also call the National Dementia Helpline on 0300 222 1122 or visit the Alzheimer’s Society forum.

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

If you’re really struggling you can also reach out to social services for some practical help with thing such as health care. You can also attend a support group to find other people who are in a similar situation. Plus you already have a built-in talking point.

Next Steps

  • If you're under 25 and would like free confidential telephone counselling from The Mix to help you figure things out complete this form and we'll call you to arrange your first session.
  • Chat about this subject on our Discussion Boards.

By Nishika Melwani

Updated on 23-Dec-2021