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Understanding Dementia 2019

Caring for someone with dementia: the emotional rollercoaster

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Jane Butler

Senior Information Editor, Carers UK

The stresses of caring for someone with dementia can affect the carer’s emotional wellbeing and ability to look after their own health.

Caring for someone can have its highs and lows and, for many, it’s also both physically and mentally exhausting. For carers of people with dementia, the complex emotions involved can often leave you feeling guilty and unable to talk to others about what you are going through. The ability to cope and look after your own health is the price you often pay.

“Every day is different” for carers

When you become a carer for a loved one with dementia, it’s hard to know how to prepare for the emotional rollercoaster that lies ahead. The unpredictability of knowing whether this will be a good or bad day can be exhausting and stressful, with little way to plan for the day – or for the future. As the person’s condition progresses and their care needs change, these additional demands can create feelings of frustration while, ultimately, more difficult decisions may yet need to be made.

“Coping with their perception of reality “

As their condition advances, many carers struggle to come to terms with the false realities their loved ones perceive. One carer explained that, at first, she kept correcting her mother when she was insisting a relative was still alive – until she saw the distress and confusion this caused. The instinct to be honest sometimes collides with the desire to make your loved ones happy, causing emotional conflict.

“I went through a period of mourning”

Meanwhile, others struggle to come to terms with the shift in the relationship dynamic, especially for children or partners who can find themselves taking on a parental role when caring. Giving care to someone who you are close to who loses the ability to recognise you can be particularly distressing.

Feelings of loss, confusion and sadness are compounded by the fact it is often impossible to communicate these emotions with the other person. While these feelings are common to many, if the carer cannot find ways to come to terms with them, they can affect their personal wellbeing – and that of the person they are caring for.

“Talking with someone in the same boat helped”

Although everyone’s story of caring for someone with dementia is unique, there are common threads weaving throughout many carers’ experiences. Many people feel that it’s beneficial to share their experiences with others in a similar situation.

Support networks (such as the Carers UK online forum) and condition-specific groups (such as Alzheimer’s Society’s Dementia Talking Point) can be helpful for the exchange of tips from people who have been there. As one carer points out: “I talk to my partner, friends, my older children, friendly work colleagues, etc…. no one else really gets it. That’s why meeting other carers – those who care for loved ones while trying to live their own life – is so important.’”

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