Dementia caregivers: cognitive decline?

Vitaliano PP, Murphy M, Young HM, Echeverria D, Borson S. (2011). Does caring for a spouse with dementia promote cognitive decline? A hypothesis and proposed mechanisms. [Abstract]. J Am Geriatr Soc, 59(5):900-8.

To discuss why spouse caregivers (CGs) of people with dementia may be at higher risk for cognitive problems and decline than demographically similar people not caring for a spouse with dementia (noncaregivers; NCGs).

This article reports a review of the literature examining relationships between CG status and cognitive problems in the context of a theoretical model of chronic stress. The model suggests that spouse CGs may be at higher risk of cognitive impairment or dementia than NCG spouses in response to several mediators, including psychosocial (e.g., depression, loneliness, social isolation, sleep problems), behavioral (e.g., exercise, diet), and physiological (e.g., metabolic syndrome and inflammation) variables.

This research has important implications because it considers modifiable risk factors for dementia that, if unchecked, may compromise the lives of CGs and their ability to function. It is hoped that an understanding of such stress-mediator-cognitive processes will help clinicians, researchers, policy-makers, and stakeholders mitigate what may be characterized as an “ironic tragedy”-dementia in both members of the caregiving dyad-if left unchecked.

Canada’s Compassionate Care Benefit

Williams AM, Eby JA, Crooks VA, Stajduhar K, Giesbrecht M, Vuksan M, Cohen SR, Brazil K, Allan D. (2011). Canada’s Compassionate Care Benefit: is it an adequate public health response to addressing the issue of caregiver burden in end-of-life care? [Abstract]. BMC Public Health, 335.

An increasingly significant public health issue in Canada, and elsewhere throughout the developed world, pertains to the provision of adequate palliative/end-of-life (P/EOL) care. Informal caregivers who take on the responsibility of providing P/EOL care often experience negative physical, mental, emotional, social and economic consequences.

In this article, we specifically examine how Canada’s Compassionate Care Benefit (CCB)–a contributory benefits social program aimed at informal P/EOL caregivers–operates as a public health response in sustaining informal caregivers providing P/EOL care, and whether or not it adequately addresses known aspects of caregiver burden that are addressed within the population health promotion (PHP) model.

As part of a national evaluation of Canada’s Compassionate Care Benefit, 57 telephone interviews were conducted with Canadian informal P/EOL caregivers in 5 different provinces, pertaining to the strengths and weaknesses of the CCB and the general caregiving experience. Interview data was coded with Nvivo software and emerging themes were identified by the research team, with such findings published elsewhere. The purpose of the present analysis was identified after comparing the findings to the literature specific to caregiver burden and public health, after which data was analyzed using the PHP model as a guiding framework.

Informal caregivers spoke to several of the determinants of health outlined in the PHP model that are implicated in their burden experience: gender, income and social status, working conditions, health and social services, social support network, and personal health practises and coping strategies. They recognized the need for improving the CCB to better address these determinants.

This study, from the perspective of family caregivers, demonstrates that the CCB is not living up to its full potential in sustaining informal P/EOL caregivers. Effort is required to transform the CCB so that it may fulfill the potential it holds for serving as one public health response to caregiver burden that forms part of a healthy public policy that addresses the determinants of this burden.

Gender differences

Navaie-Waliser M, Spriggs A, Feldman PH. (2002). Informal caregiving: differential experiences by gender. [Abstract]. Med Care, 40(12), 1249-1259.

With an aging population and public policies that limit accessible and affordable formal care services, informal caregivers, largely women, will continue bearing the overwhelming responsibility for home and long-term care services provision. This study examined gender differences among informal caregivers in caregiving activities, intensity, challenges, and coping strategies and assessed the differential effects of caregiving on their physical and emotional well-being.

Telephone interviews were conducted with a randomly selected, nationally representative sample of 1002 informal caregivers. Caregivers’ sociodemographic, and physical and emotional health characteristics; caregiving type and intensity; formal care support; difficulty with care provision; unmet needs; coping strategies; and the care recipients’ health and relationship with caregiver were examined between the genders using descriptive and multivariate analyses.

Compared with men caregivers, women caregivers were significantly more likely to be 65 years of age or older, black, married, better educated, unemployed, and primary caregivers; provide more intensive and complex care; have difficulty with care provision and balancing caregiving with other family and employment responsibilities; suffer from poorer emotional health secondary to caregiving; and cope with caregiving responsibilities by forgoing respite participation and engaging in increased religious activities.

Informal caregivers, particularly women, are under considerable stress to provide a large volume of care with little support from formal caregivers. Program planners, policy makers, and formal care providers must act together to provide accessible, affordable, and innovative support services and programs that reduce family caregiving strain.

Beyond burnout

Lilly MB, Robinson CA, Holtzman S, Bottorff JL. (2012). Can we move beyond burden and burnout to support the health and wellness of family caregivers to persons with dementia? Evidence from British Columbia, Canada. [Abstract]. Health Soc Care Community, 20(1), 103-12. Full text.

After more than a decade of concerted effort by policy-makers in Canada and elsewhere to encourage older adults to age at home, there is recognition that the ageing-in-place movement has had unintended negative consequences for family members who care for seniors. This paper outlines findings of a qualitative descriptive study to investigate the health and wellness and support needs of family caregivers to persons with dementia in the Canadian policy environment. Focus groups were conducted in 2010 with 23 caregivers and the health professionals who support them in three communities in the Southern Interior of British Columbia.

Thematic analysis guided by the constant comparison technique revealed two overarching themes: (1) forgotten: abandoned to care alone and indefinitely captures the perceived consequences of caregivers’ failed efforts to receive recognition and adequate services to support their care-giving and (2) unrealistic expectations for caregiver self-care relates to the burden of expectations for caregivers to look after themselves.

Although understanding about the concepts of caregiver burden and burnout is now quite developed, the broader sociopolitical context giving rise to these negative consequences for caregivers to individuals with dementia has not improved. If anything, the Canadian homecare policy environment has placed caregivers in more desperate circumstances.

A fundamental re-orientation towards caregivers and caregiver supports is necessary, beginning with viewing caregivers as a critical health human resource in a system that depends on their contributions in order to function. This re-orientation can create a space for providing caregivers with preventive supports, rather than resorting to costly patient care for caregivers who have reached the point of burnout and care recipients who have been institutionalised.

Aging baby boomers

Ryan, L. H., Smith, J., Antonucci, T. C., & Jackson, J. S. (2012). Cohort differences in the availability of informal caregivers: are the boomers at risk? [Abstract]. Gerontologist, 52(2), 177-88.

We compare the close family resources of Baby Boomers (BBs) to previous cohorts of older adults at population level and then examine individual-level cohort comparisons of age-related trajectories of informal care availability from midlife into old age.

Population data from the U.S. Census and from the Health and Retirement Study (HRS) are used to identify a cohort similar to the BBs on marital status and fertility rates. Using generalized linear mixed models and 10-year longitudinal data from Depression and WWII parents (DWP; n = 1,052) and the parents of BBs (PBB; n = 3,573) in the HRS, we examine cohort differences in the time-varying likelihoods of being married and of having an adult child living within 10 miles. The DWP had similar informal care resources at entry to old age as is expected in the BB.

Longitudinal analyses of the DWP and PBB cohorts in HRS reveal that the availability of family changes over time and that the DWP cohort was significantly less likely to have a spouse or a grown child living nearby.These findings, and future projections based on them, have significant implications for institutions and public policy concerned with the informal caregiving needs of the Boomer cohort as they age.

‘Hospital at home’

Wilson, A., Wynn, A., & Parker, H. (2002). Patient and carer satisfaction with ‘hospital at home’: quantitative and qualitative results from a randomised controlled trial. [Abstract]. British J General Practice, 52(474), 9-13. Full text.

‘Hospital At Home’ schemes are set to increase in the United Kingdom in response to the National Health Service Plan. To date, little detailed work has been done on the acceptability of these schemes to patients and their carers. To compare Hospital at Home patient and carer satisfaction with hospital care.

… Patients’ and carers’ views of the services were assessed by semi-structured interviews. One hundred and two patients were randomised to Hospital at Home and 97 to hospital. Forty-eight (47%) patients in the Hospital at Home arm and 35 (36%) in the hospital arm completed the satisfaction questionnaire, representing 96% and 85% of those eligible, respectively. … Responses to all six questions favoured Hospital at Home, with all but one of these differences being statistically significant. …

Themes emerging from these interviews were that patients appreciated the more personal care and better communication offered by Hospital at Home and placed great value on staying at home, which was seen to be therapeutic. Patients largely felt safe in Hospital at Home, although some would have felt safer in hospital. Some patients and carers felt that better medical care would have been provided in hospital. Carers felt that the workload imposed by Hospital at Home was no greater than by hospital admission and that the relief from care duties at home would be counterbalanced by the added strain of hospital visiting.

Patient satisfaction was greater with Hospital at Home than with hospital. Reasons included a more personal style of care and a feeling that staying at home was therapeutic. Carers did not feel that Hospital at Home imposed an extra workload.

Caring for the oldest-old (France)

Michel, J. P., Robine, J. M., & Herrmann, F. (2010). Tomorrow, who will take care of the elderly? The oldest old support ratio. Bulletin de l’Académie nationale de médecine [Bull Acad Natl Med], 194(4-5), 793-801; discussion 801-804. France. (Full abstract in English).

The 1998 report on Aging by the French National Ethical Advisory Committee stated that: “human life expectancy is increasing at its fastest rate in history”. More than 10 years later, these forecasts have been confirmed and new emerging problems call for further reflection. In particular, the place of informal caregivers needs to be reevaluated.

This article examines informal caregivers’ involvement in the care of the oldest-old and dependent adults in France, and the implications of the ongoing reduction in their numbers. Intergenerational links are examined, along with differences between chronological and functional age, chronic health impairments and disabilities in daily living. The large number of people over 75 years of age, and their difficult living conditions, underline the importance of informal caregivers. In France, in the 1950s, the oldest-old support ratio (OOSR) between persons aged 50 to 75 years and persons over 85 years was 45 to 1. In 2050 the OOSR is likely to be closer to 5 to 1!

While homecare is the most economic form of care, it also appears to be the most difficult to maintain and develop. Possible solutions include:–Better integration of old age within the human life cycle–Recognizing and supporting informal caregivers’ excellent work–Maintaining adequate numbers of community-based healthcare professionals–Providing caregivers and healthcare professionals with specific training–Developing new and financially attractive care programs.

Compassionate Care Benefit (Canada)

Williams, A.M., et al. (2011). Canada’s Compassionate Care Benefit: is it an adequate public health response to addressing the issue of caregiver burden in end-of-life care? BMC Public Health, 335. Abstract (abbreviated).

An increasingly significant public health issue in Canada, and elsewhere throughout the developed world, pertains to the provision of adequate palliative/end-of-life (P/EOL) care. Informal caregivers who take on the responsibility of providing P/EOL care often experience negative physical, mental, emotional, social and economic consequences. In this article, we specifically examine how Canada’s Compassionate Care Benefit (CCB)–a contributory benefits social program aimed at informal P/EOL caregivers–operates as a public health response in sustaining informal caregivers providing P/EOL care, and whether or not it adequately addresses known aspects of caregiver burden that are addressed within the population health promotion (PHP) model.

As part of a national evaluation of Canada’s Compassionate Care Benefit, 57 telephone interviews were conducted with Canadian informal P/EOL caregivers in 5 different provinces, pertaining to the strengths and weaknesses of the CCB and the general caregiving experience.

Informal caregivers spoke to several of the determinants of health outlined in the PHP model that are implicated in their burden experience: gender, income and social status, working conditions, health and social services, social support network, and personal health practises and coping strategies. They recognized the need for improving the CCB to better address these determinants.

This study, from the perspective of family caregivers, demonstrates that the CCB is not living up to its full potential in sustaining informal P/EOL caregivers. Effort is required to transform the CCB so that it may fulfill the potential it holds for serving as one public health response to caregiver burden that forms part of a healthy public policy that addresses the determinants of this burden.

>>>Compassionate Care Benefit (Government site)