Carers fail to understand

Some dementia patients who suffer with mild to moderate cognitive problems are often frustrated by caregivers who fail to understand their disease, a new study reveals.

The study, conducted by Penn State and the Benjamin Rose Institute on Ageing, reveals family caregivers often become the “surrogate” decision makers for relatives who have dementia.

Researchers looked at 266 pairs of people, each including an individual with mild to moderate dementia and their family caregiver. They were then interviewed separately and asked questions about how much value they place on five core values: autonomy, burden, control, family and safety.

To be eligible to participate in the study, the caregiver was required to be the primary family caregiver of the dementia patient and the patient had to be living in his or her own home.

The results show a difference in perception about the amount of care and the quality of care provided by caregivers and their patients. The study also pinpoints the major source of difference to be a lack of understanding by caregivers of the needs of their loved one with dementia.

Steven Zarit, a professor and head of the Department of Human Development and Family Studies at Penn State, says it is important for family caregivers and those with dementia to “communicate well” and to “understand” each other.

“Unfortunately, in our study we found that family caregivers and their relatives often do not understand each other well when it comes to the values they hold about giving and receiving care,” Professor Zarit says.

He claims caregivers in the study viewed people with dementia as lacking the ability to make their own decisions about daily life. “That is something that does happen as the disease progresses, but the people in our study remained capable of making decisions for themselves and could express their values in a clear and direct way,” he says.

DPS eNews received feedback from one of its subscribers, who emailed a response to a story written about the role of ageing carers (click here to read the story).

The DPS eNews reader, who wishes to remain anonymous, says there is a “misconception” about the role of the carer, suggesting it is not an easy task.

“There is a general belief the carer role ceases once the ‘cared for’ is placed in a nursing home,” she tells DPS eNews.

“My husband has Huntington’s disease; and while I cared for him at home, we received great support from government agencies, family and friends… but in the end my body said ‘no’ to the physical strain of dealing with a man who could not walk, talk, control bodily functions, or eat other than vitamised food,” she writes.

With her husband now in an aged care facility, she states that as he “suffers his demise”, she visits him at length; at least five times a week.

“I massage his hands which are now clawed with arthritis and facilitate providing any extra help by using the many strategies I have learned after nearly 20 years of caring for him,” she writes.

While she tries to understand the situation her husband is in, she states it can be “emotionally exhausting”.

“Support from other family members is wonderful, but not without its own stresses. Many supportive friends have disappeared. All the government support I had as a carer for my husband at home is no longer available,” she claims.

Many carers may suggest the issue does not lie in a “lack of understanding” for a loved one’s medical condition, but rather, there are very few resources available to support struggling carers.

If you’re a family caregiver, share your experiences about caring for a loved one with an incurable disease. Are they often “frustrated” by your efforts to care for them?