About 80 percent of people with dementia are living at home with care being provided by family members, other relatives or friends. Caring for a person with dementia puts a high psychological, physical and often financial strain on the carer. Dementia carers have significantly more medical and psychological problems than non-carers of the same age. The likelihood of becoming a carer is highest for spouses, somewhat lower for daughters and daughters-in-law, lowest for sons, other relatives and others. Hence, most informal (family) carers are women.
What do carers need?
The needs of informal (family) carers can be divided into five major categories: coping with the symptoms of dementia; dealing with difficult emotions; finding appropriate services; managing legal and financial issues; looking after self. The needs of family carers change as dementia progresses.
Needs of carers of people with dementia
|Type of need||Examples|
|Coping with the symptoms of dementia||Information on underlying disease; managing problem behaviours; dealing with physical symptoms|
|Dealing with difficult emotions||Anger, frustration, guilt, grief, bereavement, loneliness, depression, despair|
|Finding appropriate services||Patient and carer organisation; carer support group; home helpers; meals service; day care centres; respite care; choice of a nursing home|
|Managing legal and financial issues||Entitlement for financial support; long-term care insurance; disabled pass; insurance issues; driving; advance directives; enduring power of attorney|
|Looking after self||Balancing caring duties and own interests; maintaining social relationships; own health problems|
What causes carer burden?
The symptoms of dementia are not the only determinants of carer burden. There are many other partly interdependent factors. Some of these are modifiable, in particular the quality of the relationship to the person with dementia, the appraisal of the caring role, the confidence of being able to provide care, knowledge about the disease, caregiving skills and problem-solving strategies, as well as the amount of available support.
Determinants of carer burden
Coping skills are good for carers
Introduce daily routines
For a person with dementia, routines provide structure, orientation, and safety. Regularity reduces the amount of decisions that carers need to take during the day.
A person with dementia should be independent for as long as possible. Tasks that the person still can to on their own must not be taken over prematurely. Although supervising the person with dementia may take longer than doing the job oneself it may pay in terms of avoiding changed behaviours.
Make the brain work
There are many ways of cognitive stimulation, for example exercises addressing memory, attention, perception or speed – either in traditional paper-and-pencil format or computer-based. People with dementia like computer games. Be creative and try to find exercises that person can perform without being frustrated. Reminiscence – working with memories of the past, often supported by photos, films, music or objects – is an excellent form of cognitive stimulation. Doing cognitive exercises together can be fun also for the carer.
Being active and useful is a major ingredient of quality of life in people with dementia, and a major antidepressant. Try to identify activities that are feasible and enjoyable for the person with dementia. It may be worth to make the effort because activity is the best remedy for depression and apathy.
Support dignity and self-esteem
The person with dementia must be treated with respect and understanding. The focus should be on successes and achievements rather than on deficits and challenges. If people with dementia are in a positive and self-assured mood, they are easier to handle than if they are frustrated and upset.
Avoid dispute and conflict
It is useless to argue with a person with dementia. Arguing will not change their point of view but will make them feel rejected. If carers think out of the box and look at things from the perspective of the person with dementia, they make life easier for themselves.
Make it simple
Simplification can be a solution for many problems that arise from dementia. Breaking down tasks into simple steps may allow a person with dementia to perform the tasks instead of leaving it to the carers. Simplifying the environment facilitates orientation, ensures safety, and reduces the amount of guidance and supervision. Simplifying the style of communication enhances the ability of a person with dementia to take up information and minimises the need for repetition and explanation.
Keep up a sense of humour
People with dementia often retain a sense of humour. A good laugh now and then brightens up life for the person and the carer and is a remedy against frustration and distress for both.
Regular physical exercise is not only good for physical fitness – it also enhances activities of daily living and quality of life. To identify physical activities that the person with dementia can perform safely the general physician or family doctor should be consulted. Many physical activities can be done together such as walking, swimming, or cycling. Joint physical exercise is good for the carer and creates a sense of togetherness. Some sports clubs offer training programmes where people with dementia may participate. This adds a social component to physical exercise and may provide the carer with some time off.
What are carer support groups?
Dementia carer support groups are regular (e.g., weekly or bi-weekly) meetings of people who look after someone living with dementia. Usually the group consists of 10- 15 people and is led by a social worker or other professional. Participants share their experiences with caring (good ones and bad ones), learn from each other, improve their caring skills, provide mutual emotional support and encouragement. Major goals of support groups are to reduce the burden on carers and overcome social isolation.
All professionals involved in dementia care should be aware of the benefits of support groups or online programmes for dementia carers. They should inform carers about available services and encourage their use.
How do carer support groups work?
The role of the professional is to moderate the group, to provide practical information on available services and to educate the participants about dementia and dementia management.
Participants learn about basic nursing skills and non-pharmacological interventions that can be conducted in the home – such as reality orientation, reminiscence, cognitive stimulation and principles of behaviour management. Participants may also practice relaxation techniques.
A major role of carer support groups is to provide emotional and social support. By sharing their experiences and concerns carers may acknowledge their needs and form new relationships.
Carer support groups may be for free or charge a small fee. Depending on where you live, the cost may be based on your ability to pay or covered by the care receiver’s insurance.
How effective are carer support groups?
Participation in support groups improves caregivers’ mood and reduces burden. These effects last up to 3 months after program termination. Interventions in group format are more effective than individual approaches. Educating caregivers in behaviour modification techniques can reduce problem behaviours in people with dementia. Factors that are associated with the success of caregiver groups include theoretical foundation of the intervention, active role of participants, room for discussing individual problems and focus on the management of changed behaviours.
Internet-based carer support
Informal carers may have difficulty attending group meetings because of geographical barriers, lack of transportation, the caring role itself, or time constraints. Internet-based resources (interactive webinars, online support programmes, social networks) are a means to make support services available for dementia carers.