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Caring for people with dementia, alongside your own illness or immediate family

dementia alzheimer doctor patient care wellbeing
dementia alzheimer doctor patient care wellbeing

Paul Edwards

Director of Clinical Services, Dementia UK

As the number of people with dementia grows in our society, so do the demands on those who are informal carers.

We now live in a society that is ageing and ageing with dementia and much of the burden of that sits with the thousands of family carers across the UK. The difficulties for a carer can be unique and multiple.

There are many older carers juggling their own health issues, while supporting dementia in their loved one.

Supporting a family member with dementia can be a tough, often never-ending role. There are many older carers juggling their own health issues while supporting dementia in their loved one.

This presents a challenge for our already stretched health and social care systems. In addition, there are a growing number of carers who find themselves in the position of bringing up their children, managing work life and caring for their older relatives. It is this ‘sandwich generation’ where we are seeing significant rises in work related stress and increasing disruption to family life.

The ‘silent generation’ of carers

Many people over the age of 45 have a caring responsibility and we need to wake up to the fact that there should be more in place to better support this silent generation of carers. It’s about encouraging carers as well as other groups, such as employers, to recognise and speak openly about the challenges they face. Carers often talk about how alone they feel, but it really helps just to have someone who can listen to their concerns.

Caring for people with dementia, at the same time as holding down a job and raising a family, is a tough ask. We need to make sure that we build in the necessary employment support for such carers. Many organisations are doing this and have policies to support sandwich caring with the recognition that people may need time off, often at the last minute, to deal with unexpected crises that occur in addition to everyday things such as doctors’ appointments, meetings with professionals and other aspects of caring for a person with dementia.

Supporting those who are working and caring

We really need more organisations to adopt processes and procedures to support those who are working and caring, and ensure that reasonable adjustments are made. Sadly, not enough organisations do this currently and this leads to an added stress on the employee.

“Sandwich” or “dual caring” is usually defined as having carer responsibilities for children as well as older relatives.

This can of course lead to the employee’s health becoming affected which can have catastrophic effects on the carer leading to absenteeism, reduced productivity and crucially, problems in providing care for the family.

Where organisations have understood the needs of the sandwich generation, we know that this can have a positive effect on a person’s ability to cope with work and family life. This ultimately has to be good for all of us and may go some way in reducing the burden on our health and social care system as carers remain more able to cope for longer.

Caring for a person with dementia is hard work and all of us need to do our bit to support family carers. That means we need all aspects of our society to understand more, and act more to make this easier to bear for our caring generation. In the case of sandwich carers, that means employers stepping up to the plate to do what they can to create a supportive working environment for those who care. Without this, we run the risk of adding more pressure and stress into what are already often difficult situations.

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