Dementia: Is getting a break enough, or do carers need more support?

Being able to have “time off” from full-time caring for someone with dementia is important, for example by using respite care. But it might not be enough support to rely on. There are additional services for family members and carers such as self-help groups, meals on wheels, and household help.

In the group of people over the age of 80 years, 1 person out of every 5 develops dementia (20%). As more of us live longer, that means that the number of people with dementia is growing. That also means that more and more people are becoming important carers of a family member or close friend with dementia. Support services and groups for people with dementia and the people who care for them also become more and more.

The symptoms of dementia include memory loss and personality changes. Some of those changes will be easier to handle than others, and not every change will have dramatic consequences. But some changes will be very difficult to cope with. For example, a person with dementia may no longer be able to handle anger and frustration. They might suddenly lose their temper – even though this never used to happen. Moreover, dementia gets worse over the years. So the experience of caring for someone with dementia is very challenging. It can be deeply rewarding – and deeply distressing.

Caring for a person with dementia has very different challenges in the early stages than it has later on. Early on in dementia, the adjustments for both the person with dementia and their carer might be equally complex. As time goes by, though, more and more care is needed. People with dementia change and will eventually no longer remember the person caring for them. They might possibly need around-the-clock care. The load on the carer then steadily increases, until eventually the situation might become impossible for them to manage on their own.

A growing range of support services for carers

A variety of services have developed, aiming to make the lives and work of carers of people with dementia easier. This is as important for everyone involved as the possibility for a person with dementia to live with their family or friends. Support can help to make these wishes come true. But if the carer is over-burdened and depressed and can no longer manage their own feelings, this not only lowers the quality of their own life – it can also have a negative impact on the person with dementia. Carers might also need help to cope with the later advanced stages of the disease and with death of a person they love.

You can read more about what might help people with dementia here. In this information we will present the research that has been done on what might help carers cope better with the challenges that they face. A wide variety of support services have developed, although these will not all be available everywhere. There are self-help groups, training and support programs, practical help such as delivery of meals and respite care. Respite care means either that someone provides activities and care for the person with dementia outside the house, or that a person comes to the home to give the carer a break. Respite care is offered for a few hours or also overnight.

Research on respite care and other forms of support for carers

Researchers from the Cochrane Collaboration in Oxford (England) and Portland (USA) analyzed trials that tested the benefits of respite care programs in dementia. They looked for randomized controlled trials because this kind of research is the method to find out what effect different types of treatments or other programs really have. You can read more about this type of research here. The Cochrane Collaboration is an international network of researchers who look for trials and analyze their results so that they can systematically sum up the state of knowledge on the effects of different treatments.

Although the researchers were hoping to be able to assess the full range of options available to carers of people with dementia, they found that there were only very few trials of respite care: There were only 3 trials, involving just under 710 participants. Over 630 of these participants were involved in one single trial. All 3 trials were done in the USA. In all trials the carers were provided with time off from caring (but there was no assistance with household chores, for example). The support given ranged from a few hours, during which the person with dementia was taken for a walk, for example, to providing quite extensive support services. In the large trial, carers could choose from a variety of respite options, including care for the person with dementia in their own home, in a nursing home or in a daytime center. They had access to this respite care for a year.

Some “time off” might not be enough support

The researchers pointed out that conclusive research in this area is still in its infancy. It is not only that there are so many different types of support services, but there is also a wide variety of circumstances facing carers. The carers therefore have different needs across the different stages of the disease, and depending on whether the person with dementia is their partner, child, another relative or a friend.

With this in mind, the researchers concluded that more research is needed before we know enough about respite care to know for sure what helps. None of the trials showed real benefit from respite care, but this does not mean that respite care cannot help: there could be many reasons for a particular program not to show a big difference in people’s lives. However, it does mean that more support than simply a brief time off may be necessary to help carers.

Researchers from the German Institute for Quality and Efficiency in Health Care (IQWiG), the publishers of this website, reviewed different education programs for carers and measured any changes that resulted for the carers. They found 17 trials with almost 3,000 carers of people who mostly had moderate dementia. You can read more about the results of that research here. The results suggest that education programs that inform people about dementia and enable carers to exchange experiences might be able to make a difference. In one study, people with dementia were able to stay at home for longer when their carer had participated in such a program. Other important issues were often left unaddressed by these trials, for example whether educating family members improves the quality of life of the people affected or of the carers.

If you would like more help in your role as a carer and are looking for groups that offer education and support, for example, or for respite care, you should not forget to look for other support services too – such as information centers, home nursing care, meals on wheels, and household help. Do not hesitate to accept support offers that seem helpful to you in your concrete situation.


Author: German Institute for Quality and Efficiency in Health Care (IQWiG)

© IQWiG (Institute for Quality and Efficiency in Health Care)