Caregivers and their relatives disagree about care given, received

ScienceDaily (Aug. 1, 2011) — Caregivers and their relatives who suffer from mild to moderate dementia often have different perceptions regarding the amount and quality of care given and received. A study by researchers at Penn State and the Benjamin Rose Institute on Aging examined a major source of those differences -- caregivers do not understand the things that are important to their relatives with dementia.

"Family caregivers often become the surrogate decision makers of relatives who have dementia, so the two groups need to communicate well and to understand each other," said Steven Zarit, a professor and head of the Department of Human Development and Family Studies at Penn State and the study's leader. "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."

The team interviewed 266 pairs of people, each composed of an individual with mild to moderate dementia and his or her family caregiver. To participate in the study, caregivers had to be the primary family caregiver of the dementia patient and the dementia patient had to be living in his or her own home. The researchers interviewed members of the pairs separately, asking questions related to how much value they place on five core values: autonomy, burden, control, family and safety. For example, one question focused on the level of importance a dementia patient gave to the ability to spend his or her own money in the way he or she wants.

"Our results demonstrate that adult children underestimate the importance that their relatives with dementia placed on all five core values," said Zarit. "For example, the person with dementia might think it is very important to continue to be part of family celebrations, but his or her caregiver might not." The team's results will appear in the August issue of The Gerontologist.

According to Zarit, a major reason for differences in these perceptions is that caregivers come to view people with dementia as unable 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," said Zarit. "Caregivers who still saw the person with dementia as able to direct his or her daily life were also more in tune with that person's values and beliefs."

This lack of agreement about how care is provided has ominous implications for when the dementia worsens. "As people's cognitive abilities decline," Zarit said, "they can no longer express clearly what they want. Family members have to act as surrogate decision makers, but if they don't understand the dementia patients' preferences about care, they may not be able to make the best choices."

Zarit plans to continue this research by developing and evaluating protocols for improving communication between caregivers and their relatives to ensure that medical and social decisions are made in such a way that reflect dementia patients' actual values.

This work was supported by the Administration on Aging, the Robert Wood Johnson Foundation, the AARP Andrus Foundation, the Retirement Research Foundation, the National Institute of Aging and the National Institute of Mental Health. Other authors on the paper include Allison Reamy and Kyungmin Kim, both graduate students in human development and family studies at Penn State, and Carol Whitlatch of the Benjamin Rose Institute on Aging.

Story Source:

The above story is reprinted (with editorial adaptations by ScienceDaily staff) from materials provided by Penn State, via EurekAlert!, a service of AAAS.

Journal Reference:

A. M. Reamy, K. Kim, S. H. Zarit, C. J. Whitlatch. Understanding Discrepancy in Perceptions of Values: Individuals With Mild to Moderate Dementia and Their Family Caregivers. The Gerontologist, 2011; 51 (4): 473 DOI: 10.1093/geront/gnr010

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Adult day care services provide much-needed break to family caregivers

ScienceDaily (July 18, 2011) — Adult day care services significantly reduce the stress levels of family caregivers of older adults with dementia, according to a team of Penn State and Virginia Tech researchers.

"Family members who care for dementia patients are susceptible to experiencing high levels of stress," said Steven Zarit, professor and head, department of human development and family studies, Penn State. "One way of alleviating that stress is through the use of an adult day care center, which allows them a predictable break from caregiving responsibilities."

Not only do caregivers benefit from using such services, but dementia patients also gain from the break. Zarit and his colleagues showed that dementia patients who attend adult day care centers have fewer behavior problems and sleep better at night.

"The changes we have seen are as large as you'd get with medication, but with no side effects," he said.

Zarit and his team evaluated the stress levels of 150 caregivers by using a 24-hour daily diary to obrain obtain baseline information prior to the use of an adult day care service. After the caregivers began the use of an adult daycare, the researchers gathered data at various times over a two-month period. The caregivers recorded entries in their diaries, both on days when their relatives went to an adult day care service and on days when their relatives stayed home. The researchers reported their results online in the Journals of Gerontology Series B: Psychological and Social Sciences.

"In the diaries, we asked the caregivers to discuss their moods and the moods of their relatives, how agitated or restless their relatives were, and how many sleep disturbances their relatives had, among other topics," said Zarit.

The team's results revealed that caregivers generally reported greater levels of stress exposure prior to the use of an adult day care service and on days when their relatives did not attend adult day care programs. The team also found that behavior problems and poor sleep were more likely to occur on days when dementia patients remained at home.

Zarit and his colleagues are now studying the possible physiological effects these services can have on family caregivers. They are using stress markers, such as the stress hormone cortisol, to examine the body's response to high-stress days when relatives with dementia stay home versus low-stress ones when relatives with dementia attend adult day care centers.

Other Penn State researchers involved in the study include Kyungmin Kim, graduate student, human development and family studies; Elia Femia, research associate, human development and family studies; David Almeida, professor of human development and family studies, and Peter Molenaar, professor of human development and psychology.

Also part of the study was Jyoti Savla, assistant professor of human development and gerontology, Virginia Tech.

National Institute of Mental Health supported this work.

Story Source:

The above story is reprinted (with editorial adaptations by ScienceDaily staff) from materials provided by Penn State.

Journal Reference:

S. H. Zarit, K. Kim, E. E. Femia, D. M. Almeida, J. Savla, P. C. M. Molenaar. Effects of Adult Day Care on Daily Stress of Caregivers: A Within-Person Approach. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 2011; DOI: 10.1093/geronb/gbr030

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Bearing through it: How caregivers of mentally ill kin can cope

ScienceDaily (May 19, 2011) — Caring for a family member with a mental illness can be a taxing experience marked by personal sacrifices and psychological problems.

A new study from Concordia University, AMI-Québec and the University of British Columbia has found family caregivers can experience high levels of stress, self-blame, substance abuse and depressive symptoms -- unless they refocus their priorities and lighten their load.

"Being the principal caregiver to a mentally ill family member is a stressor that often creates high levels of burden and contributes to depressive symptoms," says lead author Carsten Wrosch, a professor in the Concordia University Department of Psychology and a member of the Centre for Research in Human Development.

"Caring for a relative with a mental illness can be strenuous -- such caregivers can even be more burdened than caregivers of dementia patients," Wrosch continues. "That said, even in this situation, caregivers can experience high levels of wellbeing if they adjust their goals and use effective coping strategies."

Published in the May issue of Journal of Personality and Social Psychology, the investigation followed family caregivers over a 17-month period and found those who reset priorities fared better. The research team expected that caregivers who are capable of adjusting important life goals (e.g., career, vacation, etc.) would cope better with caregiving stress and that this resilient process would protect their emotional wellbeing.

"We found participants who had an easier time abandoning goals blamed themselves less frequently for problems associated with caregiving and used alcohol or drugs less frequently to regulate their emotions," says co-author Ella Amir, a Concordia graduate and executive director at AMI-Québec, a grassroots organization committed to helping families manage the effects of mental illness.

"Avoiding self-blame and substance use, in turn, was associated with less caregiver burden and depressive symptoms," continues Amir. "Being able to disengage from goals is protective against depressive symptoms, partly because it reduces the likelihood of coping through self-blame and substance use."

Caregivers can become overstretched

While pursuing new goals was found to provide purpose to family caregivers, taking on novel pastimes could add to their strain. "Caregivers can become stretched too thin if they pursue too many goals and that may distract them from addressing stress levels that elevate their burden," says Wrosch.

"Pursuing new goals it a double-edged sword," he adds. "It provides purpose, but also increases caregiving burden, since there are times when a family member's illness suddenly takes a turn for the worse. And stressors can crop up unexpectedly in other close relationships or in the workplace."

Of the 121 people who completed the study, most were about 60 years old and had cared for a relative for an average 16 years. What's more:

78 percent of caregivers were women and 22 percent were men;57 percent had received an undergraduate degree or higher;73 per cent were married or cohabitating with a partner;41 per cent had relatives diagnosed with schizophrenia;37 per cent had relatives diagnosed with a mood disorder;22 per cent had relatives diagnosed with other mental health conditions such as obsessive compulsive disorder, attention-deficit/hyperactivity disorder.

This work was supported by the Canadian Institutes of Health Research and the Social Sciences and Humanities Research Council of Canada, the National Institute of Child Health and Human Development and the Heart and Stroke Foundation of Canada.

Story Source:

The above story is reprinted (with editorial adaptations by ScienceDaily staff) from materials provided by Concordia University, via EurekAlert!, a service of AAAS.

Journal Reference:

Carsten Wrosch, Ella Amir, Gregory E. Miller. Goal adjustment capacities, coping, and subjective well-being: The sample case of caregiving for a family member with mental illness.. Journal of Personality and Social Psychology, 2011; 100 (5): 934 DOI: 10.1037/a0022873

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Disclaimer: This article is not intended to provide medical advice, diagnosis or treatment. Views expressed here do not necessarily reflect those of ScienceDaily or its staff.

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