When Does Caregiver Stress Begin: and What to do About it?
By 2025, according to the Alzheimer’s Association, an estimated 190,000 Americans will have Alzheimer’s disease. A proportion of sufferers will eventually be looked after in some kind of care facility. Between the point of diagnosis and the years of decline that follow, there is a strong likelihood that the burden of care will fall on the shoulders of one person, perhaps the spouse or a son or daughter.
The needs of the caregiver often go unnoticed. Not uncommonly they are unsupported and unappreciated. They struggle on to a point where they become physically and emotionally spent and where their own health is highly vulnerable. As Alzheimer’s is associated with age it stands to reason that many caregivers are themselves elderly. But younger caregivers aren’t immune to the effects of stress.
Caregiver stress is a process that develops over time. It is stealthy and progressive and may even start with denial. A couple attending a medical consultation may be informed of a likely diagnosis but because the early stages of Alzheimer’s are characterized by recent memory loss rather than any personality or behavioral changes, it becomes easy for the sufferer to deny any real problem and equally easy for their partner/caregiver to become complicit in the denial.
Alzheimer’s creeps in over time and there are usually periods when the person appears quite lucid and active if a bit forgetful, but this doesn’t last. It’s hard to say when stress in a caregiver starts because we are all affected differently and some people have a low threshold. But our social support network and our access to resources also moderate stress. As the needs of the person with Alzheimer’s increase so does the time spent supervising and caring for them. For a caregiver who has never seen dementia, they quite simply don’t know what’s coming their way. Some say it’s like looking after a child. It’s an analogy often used especially in the later stages when the person needs help with everything. But what prepares us for the time the person drives off in a car, or goes for a walk in the middle of a winter’s night, barefoot and dressed only in flimsy nightwear? Are any of us taught what to do when we are followed around all day being asked the same questions over and over, day after day.
These days family doctors find themselves increasingly treating dementia sufferers and their caregivers. One of the most common ailments in caregivers is depression and this is associated with a range of other physical and mental health issues. Finding ways for caregivers to manage stress is essential and getting help or support is necessary to prevent isolation. Such things not only help the caregiver but have positive benefits for the person with Alzheimer’s.
Caregiving for a person with Alzheimer’s can be confusing. The caregiver often doesn’t know what they need, what they can ask for or even when to ask. More and more networks are coming on stream to help caregivers with their questions and more practical levels of support. The Alzheimer’s Association can put you in contact with support services in your local community. Others, for example Care2Caregivers offer free, ongoing peer support from trained caregiver counselors as well as caregiver support resources and access to support groups. Here at HealthCentral we have our own question and answer support system. Don’t suffer in silence. It’s never too early to ask questions or to reach out for support. In fact the sooner you do so the better you’ll feel and the more effective your caregiving will become.
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Christine Kennard wrote about Alzheimer’s for HealthCentral. She has many years of experience in private and public sector nursing care homes for people with dementia. She has worked in a variety of hospital, public and private health settings and specialized in community nursing. Christine is qualified in group analytic psychotherapy, is registered in general and mental health nursing and has a Masters degree.