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Caregiver Stress

Caregiving for a dementia patient can be very stressful. Overwhelmed caregivers often feel isolated, which worsens the stress. They do not seek help or consult doctors for their stress.

Check out your stress levels and suggestions to handle it at the Alzheimer’s Association’s Caregiver Stress Check page.

The 2010 Alzheimer’s Disease Facts and Figures report provides a good overview of the way caregiving for a dementia patient differs from other caregiving, and gives the impact on caregivers in terms of stress.

According to this report, caregiving for dementia patients is more stressful than caregiving for other older people. To quote:

More than 40 percent of family and other unpaid caregivers of people with Alzheimer’s and other dementias rate the emotional stress of caregiving as high or very high, compared with 28 percent of caregivers of other older people. About one-third of family caregivers of people with Alzheimer’s and other dementias have symptoms of depression.

The report also states:

One study of family care provided for people with dementia in the year before the person’s death found that half the caregivers spent at least 46 hours a week assisting the person; 59 percent felt that they were “on duty” 24 hours a day; and many felt that caregiving in this end-of-life period was extremely stressful. The stress of caregiving was so great that 72 percent of the family caregivers said they experienced relief when the person died.

Another finding is that caregiving for dementia patients lasts much longer than other caregiving:

Because Alzheimer’s and other dementias usually progress slowly, most caregivers spend many years in the caregiving role. At any point in time, 32 percent of family and other unpaid caregivers of people with Alzheimer’s and other dementias have been providing help for five years or longer, including 12 percent who have been providing care for 10 years or longer.An additional 43 percent have been providing care for one to four years, and 23 percent have provided care for less than a year.(43) Caregivers of other older people are less likely to have provided care for 1–4 years (33 percent) and five or more years (28 percent), and more likely to have provided care for less than one year (34 percent).

The report has many such findings, which confirm that caregivers for dementia patients are likely to get stressed. This underlines the need to be alert on any sign of stress so that action can be taken.

As a caregiver myself, I understand how overwhelming caregiving is. Often, it helps to understand which aspects of caregiving are causing stress, and seeking help/ fine-tuning the approach accordingly. Support groups and counseling may be useful in understanding what changes can reduce the workload and/ or stress.

If the sheer amount of work is tiring, calling in paid help or volunteers to take over part of the day can help, as can using a day-care facility. But stress can occur because of the emotional hurt caused by challenging behavior, in which case, understanding more effective ways to handle such behavior will help. perhaps the patient also suffers from some pain/ other medical condition which is causing the strange behavior, and calling in a medical professional may help identify such a problem. Stress can also occur because we are trying too hard, expecting things to improve, and feeling guilty/ frustrated/ pushing ourselves too hard. Here, it may well be a matter of accepting the nature of dementia and its progression and pacing ourselves to match it.

Caregivers often feel isolated. Participating in communities helps. Where feasible, caregivers can also avail of facilities like day care and respite care, and take a well-deserved break. Caregivers also often hesitate to pull in people they know to help them. This adds to their stress and isolation. Even if people cannot help with direct caregiving jobs, they may be able to assist with chores, or help locate services that can be used to reduce the overall burden that is overwhelming the caregiver.

On this site, I have provided some information and links. Use them if they are relevant for you. Besides, the Internet is full of information and shared experiences that can help.  Remember, a caregiver can only care for a loved-one if he/ she is herself healthy, stress-free, and energetic :-)