Maud Hevink

| 185 7 1. When caregiving takes its toll Informal caregivers often perceived their caregiving role as hard. They felt a high level of responsibility for the person living with dementia. Their physical and mental health was affected by providing informal care and this created a need for support. High level of responsibility Informal caregivers described having a high level of responsibility for the person living with dementia they supported. They felt responsible for most, if not all, provision of care, which ranged from daily tasks such as helping with eating or shopping to providing 24-hour care. They felt responsible for keeping their loved one safe and had to adapt to changes in behaviour and evolving needs such as night wandering and incontinence. Additionally, informal caregivers felt responsible for planning future care arrangements for their loved ones. I’m providing emotional support and dealing with tantrums, dealing with their kind of frustration of not really understanding. (informal caregiver 13) Impact on carers’ health These responsibilities impacted most informal caregivers at some point and negatively affected their physical and mental health. They reported losing weight, not sleeping well, feeling depressed, and one in case, suicidal thoughts. Informal caregivers indicated they only realized they needed a break when their physical and or mental health deteriorated. Well, what seemed to make it get to the point where I really just couldn’t cope anymore or felt I mean, mentally, I know this is anonymous, but I was foremost feeling suicidal. I just could not. (informal caregiver 9) In some cases, these detrimental health effects were identified by others around them, such as their adult children or care workers. I do see a lot of suffering with the family members. You can’t compare, but people that are living with their loved one may be a husband or a wife they that they deserve medals, you know, they really do go through a lot. (care worker 2)

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