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Young Carer Shares Simple Piece Of Advice For Families On World Alzheimer’s Day

by : Poppy Bilderbeck on : 21 Sep 2021 09:02
World Alzheimer’s Day: Demystifying Dementia And Alzheimer'sAlamy

Alzheimer’s is a progressive and cruel condition that affects one’s brain, and it still has no cure. 

Feared by many for the effects it has on one’s memories, the illness does not just impact those who are diagnosed, but family, friends and loved ones as they come to terms with the gradual memory loss and try to not lose a sense of the person they once knew.

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Alzheimer’s can be an extremely tough and difficult disease; it can latch onto the fit and healthy, whose bodies could continue for many years, but can take away one’s thoughts and steal precious moments and the power to recall. However, having volunteered in two different nursing homes for those diagnosed with Alzheimer’s and Dementia, while the condition is extremely saddening in many ways, the brain slowly reduced to infantile form, I have witnessed moments of magic and seen that happiness can still be found.

September is World Alzheimer’s Month and September 21 is World Alzheimer’s Day. To mark the occasion, UNILAD spoke to two young carers who have experience looking after people with the condition.

World Alzheimer’s Day is an international campaign, a ‘global opportunity to raise awareness around, educate, encourage support of and demystify dementia’, and this year’s theme is ‘Know dementia, know Alzheimer’s’.

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Dementia is an umbrella term for multiple conditions that affect the brain, listed by Dementia UK as ranging from Alzheimer’s disease to vascular dementia, dementia with Lewy bodies, frontotemporal dementia and mixed dementia (a combination of different forms).

Speaking to UNILAD, Sam*, a student who has done a placement on a dementia specialist ward, spoke of her time there and seeing a wide range of patients, including those whose dementia had been alcohol-induced.

‘It was interesting from a medical point of view to see how it affected everyone differently, what they remember, what they forget. They tend to remember things from earlier on in their life, but then every day they forget where they are and things like that,’ she said.

Nerve cells in the brain get damaged by dementia, meaning messages to and from the brain cannot be sent effectively. This subsequently prevents the body from functioning as it usually would.

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However, every person diagnosed with the disease will experience it uniquely.

While you are at greater risk of dementia as you grow older, with many cases affecting those over the age of 65, younger people can also get the condition.

The youngest person Sam saw on her placement was around 55 years old. ‘I know people can get it younger though, like around 50,’ she said.

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Most of the people Sam saw with early onset dementia ‘had it as a result of alcohol addictions’. Sam said it was ‘really sad to see because it changes the way you look, you look so much older. It’s so sad because they’ve lost such a large part of their life.’

Sam spoke of how many of the people during her placement were from ‘a lower socio-economic background’, a common theme among alcohol-induced dementia patients.

‘Any addiction I tend to find really sad, as it can often be as a result of upbringing and class. So I do sympathise with it, because once you are addicted you probably don’t even realise it and are using it as a crutch for something else. So I find alcohol-induced dementia equally as sad,’ she said.

She said getting calls from families was especially difficult, having to update them of negative progressions in patients, ‘especially as Covid meant they couldn’t even come into see them’.

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While I may have worn the badge of being a Dementia Friend, I am aware that my experiences are far removed from those who have loved ones or have had to be a carer for someone with the condition.

Speaking to UNILAD, Isabel Mogridge detailed the time she spent caring for her grandma, Flo, for 18 months when she moved in with her and her parents in March 2019. Isabel said her gran moved in ‘shortly after her symptoms began and was diagnosed a few months later’.

Isabel and her grandmother had ‘always been close’, but living in different cities, Isabel hadn’t been able to see her as often.

She describes her gran as having been ‘extremely bright, observant and as sharp as a pin’. ‘This is probably the aspect of her personality that I felt was most affected by the disease over the course of the year-and-a-half I spent living with her,’ Isabel said.

A person with Dementia can end up forgetting names or where they put things, they might find it difficult to understand what is being said to them or how to articulate what they are thinking. It can leave those with the condition feeling confused, leading to an array of emotions that can further change how the person feels and behaves.

Isabel recalls how she and her grandma used to be ‘able to do things quite spontaneously’, such as going for a walk, or watching a film. However, this became ‘difficult for her to do without planning far in advance’ once she was diagnosed with Alzheimer’s.

She said: 

While this doesn’t sound like a particularly awful symptom, it did change her personality as she became more highly strung and meticulous with details and plans.

Isabel said the ‘most distressing’ part of her gran’s diagnosis was ‘probably the fact that, because of the nature of the disease, she struggled to understand what was happening to her, why she was feeling different and how her interactions with others had changed so much’.

Alzheimer’s currently effects more than 850,000 people in the UK, according to an Alzheimer’s Society 2014 report, and an estimated 5.7 million Americans of all ages, according to the Alzheimer’s Association.

While a 2019 poll showed a majority of MPs believed that Alzheimer’s and Dementia care services were underfunded.

Isabel agreed, saying she doesn’t think there is currently ‘enough support for families caring for those with Alzheimer’s’, and that her family never got a carer to help with her gran.

While services may be stretched, Sam worked on a ward specific to dementia and frailty, where all the healthcare assistants and nurses were ‘amazing’, she said.

‘Working there for ages on that ward, compared to other mental health hospitals, you tend to stay on there a lot longer, working there three or four times a week, so then you build up a relationship. You could tell they all really cared,’ Sam explained.

Through weekly multidisciplinary meetings, Sam noted the amount of staff involved in the caring of patients. From occupational therapists to doctors, physios and psychology, she said it’s ‘a massive team effort, and everyone really cared, which was lovely to see’.

Sam noted that, despite her training and the valuable support and advice she received from other staff, times could be difficult on the dementia specialist ward, as the illness can be a sad one to see.

‘One of the things I’ve found the most sad is there was an older gentleman who had it and he really reminded me of my grandad. He was always so lovely and sweet’, she said.

She continued:

I did my placement over six weeks and had to see him just get progressively worse and worse. When we’d have handovers he’d get up and ask to leave, and asking to see his mum.

But he was 83, so his mother had probably passed away quite a while ago. It was the everyday of seeing him deteriorate and completely forget where he is.

Slowly seeing him forget everything, like how to put on clothes, was so sad to see for me.

It could also be difficult to manage certain patients whose dementia made them act out of character and, at times, inappropriately, Sam said.

She detailed an occasion in which a patient was ‘sexually inappropriate’. ‘It was seriously uncomfortable. You always had to go in pairs, but he would expose himself all the time when I was trying to give him medication and things,’ she said.

However, during the time on her placement, Sam also detailed some special moments between herself and patients. Such as one man who she often had to visit to check on his diabetes.

‘One of the best moments, was this patient who was really funny, in the way he said things. He had diabetes and every time I had to go and take his blood sugars and give him his insulin he’d forget he’d have to get it done,’ she said. Sam recalls how he’d joke about her coming back all the time and ‘being obsessed with him’, due to having to check on him three times a day.

When asked what advice she would give family members and friends of those who have been diagnosed with Alzheimer’s, Sam said: ‘One thing is staying in contact with them. You’d hope that families do that but… I think it’s really good for them to have someone constant so it helps with their memory.’

Patients will ‘start to forget people, but if they’re regularly in contact with people it makes it a bit easier for them to recognise people and they’d likely start remembering you more, which is good for them,’ Sam said.

Isabel also reiterated that it would have been ‘helpful to have had guidance from someone’ when she and her family were caring for her gran, so they could have ‘understood her more easily’.

Sam is aware services are stretched, but says those who are caring for patients with Alzheimer’s should receive patience from families and friends with loved ones with the disease. ‘Families don’t always understand what it’s like caring for the patient,’ she said.

‘Patients often come to hospitals as a respite from families so they can have a break, as it is such a struggle to care for people with dementia sometimes. But just to be a bit patient with staff,’ she said.

While Sam understands that families want the best for the patient, her ward had around 18 people on it at any one time, all of whom staff have to care for. ‘So it would be great if people could consider that more and just be kind as we are trying our best and staff really don’t get paid enough anyway. They’re really stretched and there’s never enough staff, so something I try to remind families on the outside is just to be a bit more patient,’ she said.

When asked what she would have wanted to know as a young carer prior to her grandmother’s diagnosis, Isabel said learning ‘not to correct her when she would get confused’ made a big difference in the way she cared for and interacted with her.

‘For example, she would see people in the mirror behind her or make mistakes on dates like my parent’s wedding anniversary and the best thing to do was to not correct her errors,’ she said.

Isabel explained that making these corrections would lead to her becoming upset or frustrated because she wasn’t ‘necessarily aware of the mistakes she was making’.

Isabel believes this is a really important principle to implement, ‘because it must be so difficult for [those with Alzheimer’s] when everything they say seems to be wrong’.

Despite the sadness of the disease, Isabel it keen to stress that happy moments are still able to be found. Music, films and food are all ‘amazing ways’ at jogging memories from someone’s life, she says.

Isabel encourages anyone volunteering at a home for patients or having to care for a loved one with Alzheimer’s that speaking to family and getting tips on how to jog their memories is a ‘great idea’, such as photo albums.

Alzheimer’s has found itself as a central topic to certain television shows and films, helping spread awareness of the disease, such as Still Alice (2014), starring Julianne Moore.

The film movingly depicted Moore as a mother of three, diagnosed with early-onset Alzheimer’s and struggling to come to terms with her diagnosis.

More recently, new Channel 4 series Help, starring Stephen Graham and Jodie Comer, is set in a care home for those with the disease.

The series is set during the coronavirus pandemic, and provides a hard-hitting insight into the care system and how COVID-19 has affected patients with Alzheimer’s and those around them. The next episode is available to watch on Thursday, September 23, at 9.00pm.

*Some names have been changed for the purpose of this article

If you’ve been affected by any of these issues and want to speak to a Dementia specialist, you can call Dementia UK on 0800  888 6678 or contact them via their email or online forum

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Credits

Dementia UK and 3 others
  1. Dementia UK

    What is dementia?

  2. Alzheimer's Association

    Facts and Figures

  3. Alzheimer's Society

    Alzheimer's disease

  4. Public Health Gibraltar

    World Alzheimer's Day - 21st September 2021