Promote the health of dementia caregivers

The vast majority of the care for people with Alzheimer’s dementia is and will be carried out by informal caregivers as health care services across the world cut funding. This is a major concern in an aging world with more and more people being diagnosed with Alzheimer’s dementia and where there is as yet no medical cure. It is also important to realize that most informal caregivers (spouses, children, and friends) are people who typically have no prior training in this task and, certainly in the early days after diagnosis, little knowledge of what the person with Alzheimer’s dementia is going through or what the future (for either themselves or the patient) holds.

Alzheimer’s dementia is a progressive illness with deterioration expected over time in many aspects of cognitive and functional performance/ability. People who have just been diagnosed with Alzheimer’s dementia can live for 2 to 18 years (with an average of 7 years) after the initial diagnosis. This, along with the widespread difficulties a patient suffers from makes the future for both the person with Alzheimer’s dementia and their caregiver unpredictable and this uncertainty makes for a stressful home environment. Furthermore, people differ hugely in how quickly or slowly they will deteriorate over time, which can make planning for the future difficult.

What is more: caregivers of people with Alzheimer’s dementia are themselves susceptible to a range of health and psychological problems; not everyone deals well with the stress of caring on a daily basis. Informal caregivers are especially prone to developing depression and are more likely than peers of the same age who are not caregivers of needing more health care. This can include more trips to their doctors, more over-the-counter medications, and the development of a variety of illnesses that can be triggered by stress. Burnout is not uncommon among caregivers of people with Alzheimer’s dementia. We need to be aware therefore that Alzheimer’s dementia affects not just the person who has been diagnosed with this devastating disease but also the person who cares for them.

The unpredictability, the changing roles within the family unit, the financial strains, the underlying dynamics of the relationship between caregiver and recipient, and the individual characteristics of both members of the couple/dyad can all have their toll. Indeed, caregivers of people with Alzheimer’s dementia can have what is known in the literature as ‘caregiver burden’, a term that has been applied to health problems suffered by the caregiver, to financial difficulties and more besides.

It is not all ‘bad news’ however. Some studies have found that caregiving can actually be beneficial to the caregiver, the so-called ‘healthy caregiver hypothesis’, where some caregivers rather than suffering from burden and stress have better cognition, functioning, and health (compared to their non-caregiving peers). Some studies have suggested that this may be due to the need for multitasking, extra planning, and often more physical activity necessary in the caregiving role. In some people therefore caregiving may serve as a kind of ‘buffer’ protecting the caregiver against deterioration. The task for future studies will be in figuring out how we can reduce burden and increase health in caregivers of people with Alzheimer’s dementia. Some preliminary studies have been doing just that.

Caregivers of people with Alzheimer’s dementia should therefore be a priority for health care professionals not only because the care of their patients depends on the good health of the caregivers but also because caregivers are themselves at a high risk of becoming patients themselves.

Ruth E. Mark
Department of Cognitive Neuropsychology, Tilburg University, The Netherlands

 

Publication

Promote the Health of Dementia Caregivers.
Mark RE
Am J Alzheimers Dis Other Demen. 2015 Jul 3

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