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How dementia affects sufferers — and their carers

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Angela Rippon

Alzheimer’s ambassador

Question: Is dementia receiving the attention it deserves?
Answer: It’s starting to — and it should, because many of us have a close family member or friend with the condition, says Alzheimer’s ambassador, Angela Rippon.


“I heard a wonderful quote recently from a 12 year old,” says broadcaster and journalist, Angela Rippon. “She was reading from a book of sayings about dementia and said: ‘When my gran was diagnosed with dementia, we all got it, because dementia is a team event.’ That was so perceptive because it sums up what dementia actually is. It affects everyone — as well as the person with the condition.”

Angela knows this only too well because her late mother, Edna, was diagnosed with dementia in 2004. It didn’t only rob Edna of her memory: it changed her character, too. “It’s important to see the person and not the illness,” says Angela. “I had to get to know someone who was not the woman who had been my mother for all those years. Yet she was still the same person behind the symptoms. And I didn’t stop loving her.”

Support

Angela is a long-time supporter and ambassador of the Alzheimer’s Society and co-chairs the Dementia Friendly Communities Champions Group as part of the Prime Minister’s Challenge on Dementia. “When my mother was diagnosed, I did my job as a journalist to find out as much as I possibly could about the symptoms,” she says. “But I’m more than aware that many people who suddenly find themselves as carers of someone with dementia have no idea about it or where to go to for help.

“That’s why we aim to establish dementia friendly communities throughout the country so that people are being supported, whether they are patients or carers. Dementia Friends are a wonderful safety net because these are people who will offer respite to a carer. Carers are always at the forefront of our minds — and just as important to us as the patients.”

Network

Angela believes that dementia is now starting to receive the attention it deserves from the government, broadcasters and the public. And so it should, she points out. According to figures from the Alzheimer’s Society, around 23 million of the UK population have a close friend or family member with dementia. “It’s that big in the community,” she says. “We can’t ignore it anymore.”

Anyone experiencing symptoms of dementia — or have a loved one experiencing symptoms — should consult their GP. They should also contact the Alzheimer’s Society and Carers Trust. “Both are experts in the condition and they can give you advice, help and support to ensure that you are not on your own,” says Angela. “There’s a whole network out there — so tap into it and use it.”

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Home » Carers » How dementia affects sufferers — and their carers
Your Later Life 2020

Dealing with bereavement and grief as a carer

Helen Walker (pictured)

Chief Executive, Carers UK

Everyone feels and reacts differently to becoming bereaved. There is no right or wrong way to deal with how you feel about this. 


COVID-19 has meant that some carers are having to face the loss of the person they looked after, maybe under very difficult circumstances.

Grieving will feel very different  right now, as carers are not able to reach out to others in the ways they usually would, and support services are not all operating as normal.

In the immediate aftermath of losing someone, there are usually many practical matters to deal with, from registering the death to organising the funeral. It can feel like your emotions are on hold.

It may help to break these tasks down, listing them in order of priority and ticking them off once completed.

Carers will experience a whole range of emotions, especially if this signifies the end of their caring role.

Consider a memorial service

The way funerals are taking place at the moment may not be the way you would want to say goodbye to someone.

You might want to start planning a memorial service or gathering for those unable to attend. That way, you know that everyone who wants to say goodbye can, and you have a chance to celebrate their life as you normally would have done.

Understandably, you might feel too upset to face these tasks. If you feel able to, tell the people around you what you need from them and how they can help.

There are professionals who can support you.

Expect unexpected emotions

Everyone feels and reacts differently to becoming bereaved. There is no right or wrong way to deal with how you feel about this. 

As well as the emotional pain of losing someone they love, carers will experience a whole range of emotions, especially if this signifies the end of their caring role.

Your feelings could range from relief at having more time to yourself, to guilt at feeling that way, to a desire to make some big changes, to feeling exhausted, alone and unable to do much at all.

Feeling free to acknowledge these complex emotions can be an important part of coming to terms with your loss.

Sometimes it can help to share your feelings with a close family member or friend or you could turn to a bereavement charity such as Cruse Bereavement Care or Sue Ryder’s Online Bereavement Support.

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