Social commitment robots, dementia

Roger K, Guse L, Mordoch E, Osterreicher A. (2012). Social commitment robots and dementia. [Abstract]. Can J Aging, 31(1):87-94. Full text.

In 2010, approximately 500,000 Canadians suffered from a dementia-related illness. The number of sufferers is estimated to double in about 25 years. Due to this growing demographic, dementia (most frequently caused by Alzheimer’s disease) will increasingly have a significant impact on our aging community and their caregivers.

Dementia is associated with challenging behaviours such as agitation, wandering, and aggression. Care providers must find innovative strategies that facilitate the quality of life for this population; moreover, such strategies must value the individual person. Social commitment robots – designed specifically with communication and therapeutic purposes – provide one means towards attaining this goal.

This paper describes a study in which Paro (a robotic baby harp seal) was used as part of a summer training program for students. Preliminary conclusions suggest that the integration of social commitment robots may be clinically valuable for older, agitated persons living with dementia in long-term care settings.

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.

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.

Awareness of community services

Ploeg J, Denton M, Tindale J, Hutchison B, Brazil K, Akhtar-Danesh N, Lillie J, Plenderleith JM. (2009). Older adults’ awareness of community health and support services for dementia care. [Abstract]. Can J Aging, 28(4), 359-70.

The article examines where older adults seek help in caring for a parent with dementia and the factors associated with their identification of community health and support services as sources of assistance. The authors conducted telephone interviews, using random digit dialing, of 1,152 adults aged 50 and over in the city of Hamilton. Respondents received a vignette that raised issues related to parental dementia.

In identifying support sources, over 37 per cent of respondents identified their physician, 33 per cent identified informal support such as family and neighbors, and 31 per cent identified home health services. Only 18 per cent identified community support services.

Female participants having higher levels of education were more likely to identify their physician as a source of support. Knowing where to find information about community support services was associated with an increased likelihood of mentioning physicians and home health services as sources of assistance.

On the edge of advanced COPD

Simpson, A. C., Young, J., Donahue, M., & Rocker, G. (2010). A day at a time: caregiving on the edge in advanced COPD. [Abstract]. Int J Chron Obstruct Pulmon Dis, 141-51.

The human cost of advanced chronic obstructive pulmonary disease (COPD) for informal caregivers in Canada is mostly unknown. Formal care is episodic, and informal caregivers provide the bulk of care between exacerbations. While patients fear becoming burdensome to family, we lack relevant data against which to assess the validity of this fear.

The purpose of our qualitative study was to better understand the extent and nature of ‘burden’ experienced by informal caregivers in advanced COPD. The analysis of 14 informal caregivers interviews yielded the global theme ‘a day at a time,’ reflecting caregivers’ approach to the process of adjusting/coping. Subthemes were: loss of intimate relationship/identity, disease-related demands, and coping-related factors. Caregivers experiencing most distress described greater negative impact on relational dynamics and identity, effects they associated with increasing illness demands especially care recipients’ difficult, emotionally controlling attitudes/behaviors.

Our findings reflect substantial caregiver vulnerability in terms of an imbalance between burden and coping capacity. Informal caregivers provide necessary, cost-effective care for those living with COPD and/or other chronic illness. Improved understanding of the physical, emotional, spiritual, and relational factors contributing to their vulnerability can inform new chronic care models better able to support their efforts.

Dancing on the stairs (end-of-life)

Edwards, S. B., Olson, K., Koop, P. M., & Northcott, H. C. (2011). Patient and family caregiver decision-making in the context of advanced cancer. [Abstract]. Cancer Nursing, Sep 2.

BACKGROUND: A basic tenet of palliative care is to maintain an individual’s control over the dying process. However, when decline occurs quickly, as may be the case in advanced cancer, transition of responsibility for illness management to a family caregiver may become necessary when care takes place in the home.
OBJECTIVE: The aim of this study was to understand the decision-making process that occurs between a dying individual and his or her family caregiver.
METHODS: Participants in this grounded theory study were selected by purposive and theoretical sampling methods. Data were collected and analyzed using a constant comparison approach.
RESULTS: The core category covering captured the inordinate efforts taken by informal caregivers to ensure that their family member would be able to die in the manner of his or her choosing. The basic social process, dancing on the stairs, chronicled the families’ decision-making process as they navigated through this delicate and precarious end stage of life.
CONCLUSIONS: Dancing on the stairs required a close relationship between 2 people who were willing to remain engaged with each other, despite the difficulties they faced. This decision-making process may be applicable to other health care transitions in people’s lives that need to be managed with another person.
IMPLICATIONS FOR NURSING PRACTICE: Palliative care education for nurses in all care health settings may ease transitions for end-stage patients. Health promotion initiatives designed to educate the lay public about advance directives and end-stage illness management in a home setting may help to prepare family caregivers for their future responsibilities.

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)

Advanced heart failure: care team

Kaasalainen, S., et al. (2011). Managing palliative care for adults with advanced heart failure. Canadian Journal of Nursing Research, 43(3), 38-57. Abstract

The purpose of this study was to explore the care processes experienced by community-dwelling adults dying from advanced heart failure, their family caregivers, and their health-care providers. A descriptive qualitative design was used to guide data collection, analysis, and interpretation. The sample comprised 8 patients, 10 informal caregivers, 11 nurses, 3 physicians, and 3 pharmacists.

Data analysis revealed that palliative care was influenced by unique contextual factors (i.e., cancer model of palliative care, limited access to resources, prognostication challenges).

Patients described choosing interventions and living with fatigue, pain, shortness of breath, and functional decline. Family caregivers described surviving caregiver burden and drawing on their faith.

Health professionals described their role as trying to coordinate care, building expertise, managing medications, and optimizing interprofessional collaboration.

Participants strove towards 3 outcomes: effective symptom management, satisfaction with care, and a peaceful death.

Sexual intimacy and prostate cancer

Beck, A. M., et al. (2009). Sexual intimacy in heterosexual couples after prostate cancer treatment: What we know and what we still need to learn. Urol Oncol, 27(2), 137-43. Abstract. Source.

Receiving a diagnosis of and treatment for prostate cancer often results in significant physical side-effects and associated psychosocial stressors that can interfere with the experience of sexual intimacy for couples. Despite the fact that prostate cancer affects mainly older men, the maintenance of sexual intimacy is an important issue to consider, as the majority of older adults continue to value, engage in, and enjoy sexual activity throughout their lives.

While the current research identifies the challenges that many men face, little is known about the strategies that couples use to successfully maintain sexual intimacy after prostate cancer treatment. In this review article, the existing literature on sexual intimacy after prostate cancer is reviewed, a critical analysis of current limitations in our knowledge and understanding is provided, and directions for further research are suggested.

The aging of Canada’s population

From “Expert perspectives on select areas of Canadian health policy.” PolicyMatters.ca. Retrieved Feb. 5. 2012. >>>Read more

Some have called it the “grey tsunami”. The boomer generation is growing older, quickly. With those born at the early end of that generation about to turn 65, the population of senior citizens is about to explode. In fact, according to Statistics Canada, the population of those considered to be senior citizens is growing, and is also proportionally increasing relative to other age groups:

• In 2001, there were 3.9 million seniors;
• By 2021, it is estimated there will be 6.7 million seniors;
• By 2041, it is estimate there will be 9.2 million seniors – this represent one in every four Canadians;
• The average 65 year old can expect to live to 85 years of age and many will live beyond 100;
• Senior citizens are more active, productive, and participatory than ever before.