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Skip to 0 minutes and 6 secondsI don't particularly like and being labelled by professionals as a carer, because I was his wife. You know, that is the thing. I was his wife who cared. Although I am known as a full time carer because that is my role, I never think of myself as Joy's carer. I'm Joy's husband. We've been married nearly 39 years now, and I never want that fact to change. I am her husband first. I think dementia is such a profound disease. The effect it has relationship is the absolute key thing, certainly in our family. I looked after my grandmother for a number of years. She had vascular dementia, for probably the best part of two decades. I looked after her.

Skip to 0 minutes and 55 secondsAnd now, my Dad's got Alzheimer's, and he lives 300 miles away with my mum. And with my Nan I saw as the disease progressed, she needed support more and more and we became much closer. She needed the help from me because I was the continuity. I was the person who kept in contact with her. I saw her at least once or twice a week. I was that continuum through her care. With my Dad, it's more distant and it's much more difficult. I find it's a real struggle to be able to offer as much as I want to when he's so far away. And the same for my brother, who's a little bit closer.

Skip to 1 minute and 33 secondsThe thing I see is the profound effect on the relationship between him and my mum. The sense of grieving that she's going through, I think. And thinking that their life together in retirement was going to be one thing, and now it's completely and utterly different, how it's affected, and how we try as a family to try and offer that support. It's enormously challenging. It's enormously challenging I find. Now it does change the dynamics when you are married to someone because you've gone from, in my case, the person who was always looked after and taken care and made-- you know I didn't make major-- well, we made major decisions together, but he coped with everything.

Skip to 2 minutes and 16 secondsAnd now I'm that person who has to deal with the-- if anything goes wrong in the house. The person that Jim was was not the person that he's become now. It's not the same man that I fell in love with. He's different. But he's still Jim. I think the more stressful side of it, apart from seeing your loved one deteriorate over the years and whatnot, is dealing with the likes of authority, benefits, care, whether it's companies, whether it's the homes, sometimes specialists. And I just found things like that very stressful. You know, it's battles that put into place that needn't be there, really, with decent communication and conversation.

Taking on a caring role

The next few steps are focused on the challenges we face as carers. In this video, carers describe the impact dementia has had on their personal relationships, and some of the common challenges they face day to day.

Care is something we give and receive throughout our lives -caring for others can be rewarding as well as challenging. When caring for someone living with dementia, the challenges we face are likely to be different at different stages of dementia, and depend on the particular condition.

Our everyday decisions and activities will change as we adapt to new circumstances. Some challenges in early dementia (such as negotiating about driving, or fears about safety whilst out and about) may reduce as dementia progresses, whilst other communication challenges (such as bathing or dressing) are likely to increase.

We may deal with some challenges better than others, or receive help that makes things a little easier. So it’s more complicated than saying the challenges increase as dementia progresses.

Some changes and challenges are not directly related to the symptoms of dementia, but are important because they impact on our ability to live well. This could be dealing with some loss of privacy when care-workers come into our homes, or fitting care around work or other commitments.

Carers have told us that a good day for them might be when they have had a good nights’ sleep, when they have found an hour for themselves, or when they have had a meaningful conversation.

How would you describe a good day?

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This video is from the free online course:

Dementia Care: Staying Connected and Living Well

Newcastle University

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