The impact of dementia on carers and family members

In the UK, there are around 700,000 people who are carers for a friend or family member with dementia. As the number of people living with dementia (PLWD) rises, this number will inevitably rise too.

There are many challenges that carers and family members face, and the impacts of dementia can be far-reaching. For example, there are often adverse physical and psychological effects, but for many, there can also be a rewarding side to caring for someone living with dementia.

 

Relationships with other family members may change

Dementia can change the relationships of the surrounding people. Family dynamics can be affected, both positively and negatively, as a result of a family member being diagnosed with dementia. For example, relationships between siblings can become especially strained when caregiving responsibilities are not perceived to be “evenly” distributed or disagreements on decisions relating to care and finances, as the amount of care needed for a parent increases.

According to one survey, 75% of carers feel that others don’t understand the effects of caring on their personal and social wellbeing, which can contribute to further resentment among families.

Males in these roles are statistically less likely to define themselves as carers and more reluctant to seek support, which brings additional challenges, and perhaps also points to broader issues of gender roles and stereotyping in our society. Additionally, carers may not want to burden other family members or even let them know about some of the more complex realities of the situation.

 

Carers can lose time for themselves

Studies have shown that 57% of carers lose touch with family or friends as a result of their caring responsibilities, leading to further isolation and emotional distress. Caring for a family member obviously also takes up time, with some caring for their loved ones up to 24 hours a day, seven days a week. They may have to take time out of work and away from their own families in order to care for them, and prioritise this over their hobbies and social lives.

In addition to the actual physical costs of caring for someone, such as higher energy bills, specialist equipment, and care products, this could potentially affect their financial situation, with a loss of earnings or limited career progression.

Reports also suggest that by 2030, dementia caring obligations will cost companies more than £3 billion. In an already tough economic climate, it can be a struggle for families to provide all the necessary care for PLWD, and some may need to make sacrifices elsewhere to make up for this.

 

Significance on physical and mental health

Being a carer for a PLWD can also have an impact on one’s health. Physically, caregivers may experience a decline in health and fitness, as they are spending less time looking after their own bodies.

The time they may have spent on exercise, sleep and eating healthily can be taken up by other responsibilities that they believe need to be prioritised in order to care for their relatives. Their mental health can also suffer, with studies frequently showing that carers are at an increased risk of stress and depression.

The nature of a carer’s relationship with their patient or family member who is living with dementia is likely to change, and witnessing their struggles and cognitive decline can be incredibly challenging emotionally. The unpredictable nature of dementia brings uncertainty and often anxiety to an already stressful situation.

However, there are many positives that come from caring for PLWD, as well as ways to alleviate some of the negatives. A study reflecting on the strains and gains of caring for those with Alzheimer’s found that up to 90% of caregivers had positive experiences, such as forming deeper bonds, sharing activities, personal growth and enjoying spending more time with their loved one.

Some families may experience a new closeness as they work together to deal with stressful situations and perhaps even develop skills and find hidden strengths. Compassion and empathy are two great qualities that can be learned or developed through caring for someone.

 

There is support available for carers

There is help out there for those who are struggling or maybe just need a little support or guidance. It can be a good idea to register as a carer with a GP and apply for a carer’s assessment. Some carers may be eligible for financial benefits such as a Carer’s Allowance, or other types of support from their local council.

Charities can provide invaluable support and advice, which can often be accessed online or over the phone. Carers should also look to family members, friends and even support groups, and not be afraid to ask for help. Everyone’s situation is unique, so there should be no need to feel guilty or ashamed about it. There is a lot to gain from sharing experiences and advice with others who are going through something similar.

It is important for caregivers to make time for themselves and their families. This can sometimes mean taking breaks from caring. For some, other friends or family may be able to take over or take turns being a caregiver, however temporarily.

For others, options may include day centres or respite care for the PLWD. As above, everyone’s circumstances and experience with dementia is different, so it is about finding what works best for their own family and achieving a healthy balance.

 

Dementia-friendly TV can have positive effects on PLWD, and their caregivers

My Life TV could help to reduce the negative impact of dementia on carers and family members. Watching ‘dementia-friendly TV’ can be a way for PLWD to relax, engage and have fun. Carers may enjoy sharing these experiences with their loved ones, and seeing the joy it brings them. It may also give them an opportunity to learn more about them, as they reminisce on past memories, or nostalgic TV and music from their younger years.

It has been shown to combat boredom and loneliness, and help reduce mental health issues for PLWD, perhaps making it easier for carers to deal with difficult behaviours. For those carers who are not spending as much time with them as they might like to, it could help to assuage some of the guilt.

Ultimately, caregivers may be able to find some more time for themselves, and relieve some stress. The benefits of dementia-friendly TV on PLWD will also influence their carers and family members, and make the caregiving experience a much more positive one.