Mental health articles

Impact of dementia on the family: quality of life as a carer

The effect of dementia on family carers is well documented. The Admiral Nursing Service was established to work specifically with family carers of people with dementia. Their assessment schedule focuses not only on the client’s needs but  more significantly on those of the carer. This assessment includes the carer’s mental and physical health needs, their need for support to continue being ‘who they are’, information, practical help and eventually letting go of their role as carer. Most people with dementia live in the community with about half of them being cared

for by their family and friends, and the responsibility for caring usually rests on one person. Although caring is recognised as being stressful, it can also be an opportunity for challenge and developing new skills, or learning that you can do more than you thought possible. The scenario below shows how one man felt that having the opportunity to care for his wife actually enriched

his life.

Reciprocity and mutuality are important aspects of being a carer. Caring can also have a negative impact on the carer’s emotional and physical wellbeing. If the relationship prior to dementia affecting their lives was not good, maybe hostile or resentful, the experience for the carer may be very different – which will affect the person with dementia too.

The process of caring changes over time, just as the dementia develops. Carers may not see themselves in that role initially, and may not welcome it when they do. It is recognised that caring for someone with dementia can be more stressful than caring for someone with a physical illness. This is due in part to the changes in personality and the illness’s impact on relationships. It is also something that can not be seen, but affects every aspect of life. The repeated questioning, anxiety and difficulty in accepting explanations takes its toll on the carer, who may experience frustration, depression and exhaustion.

Carers describe how friends and family stop calling and social contact reduces. Families and friends experience a range of emotions and levels of understanding, which change as the dementia develops. Some families report feeling isolated and anxious, having gone through a process of change with the person they love.

Sometimes, partners describe feeling robbed of the retirement they had looked forward to, and their adult children feel the loss of their parent while having to look after them. The way carers feel about their role depends on a number of factors, including the carer’s personality and how skilled they feel in what they are doing.

The more able, knowledgeable and confident carers feel, the more likely they are to report satisfaction in caring.

This reinforces the need to work with carers and provide information and support to meet their needs. Carers are entitled to an assessment of their needs through the Carers (Recognition and Services) Act 1995, and more recent legislation, the Carers (Equal Opportunities) Act 2004, ensures leisure, work and education opportunities are considered within the assessment.

Care staff often comment on the responses of carers when a loved one is admitted to residential or nursing care, either on a long-term basis or for respite. Criticism over the way family carers complain about clothing, or that spectacles weren’t clean are often valid, and may also be a way for the carer to express their difficulty in accepting that help is needed and that they cannot cope alone. Family carers want to be included in decision-making and involved in caring for their family member. They want to be respected not only for the role they have but also for who they are.

The carer will have a wealth of information about the client and have a shared experience. Working as partners in care will benefit the client, their carer and staff because knowledge and expertise can be used to ensure the person with dementia receives the best possible care, and carers will feel included in the process. The person with dementia is more likely to maintain their identity and thereby feel less threatened and more in control of their life. The challenge to staff is to be flexible and open to establishing a culture of care that is empowering, supportive and

meaningful to the client and carers, rather than an efficient, task-orientated regime.

This requires really knowing the clients and taking the time to find out what makes them who they are, even if the person is now severely affected by the dementing process. Taking time to preserve and value the identity of an individual creates an atmosphere of respect and person-centred care. Paying attention to cultural and religious beliefs honours the differences and individuality of the clients, and gives a message to carers that their loved one is in a place that is safe and respectful.

Tags: dementia, family