Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions

From the AARP Public Policy Institute, Insight on the Issues series, this paper reports on results from a national survey showing that caregivers of family members with challenging behaviors were more likely to perform more than one medical/nursing task, such as managing medications, and often do so with resistance from the person they are trying to help.

This analysis offers recommendations for assisting family caregivers who play this dual role.

http://bit.ly/1rE7SaV

Moving toward Person- and Family-centered Care

This report from AARP defines person- and family-centered care, and outlines the central tenets of each caring philosophy. It explains that family caregivers can be an invaluable source of care for their loved ones. The paper argues that public policies should be instituted to provide greater support to these caregivers, particularly when it comes to supporting them and coordinating care among nurses, direct-care workers, and other professional caregivers.
http://www.directcareclearinghouse.org/l_art_det.jsp?res_id=314410

Seniors in need, caregivers in distress

On April 16^th, the Health Council of Canada released the report, Seniors in need, caregivers in distress: What are the home care priorities for seniors in Canada?  

The use of home care services has notably increased in the last decade. This report takes a deeper look at the seniors who are receiving home care, the family caregivers who are lending support, and the overall challenges of home care in Canada.

Along with our analyses of home care data, the report features caregiver stories that take a poignant look at the struggles seniors and their caregivers face, as their health care needs increase.

Also profiled are Canadian innovative practices, as well as some international examples of how home care can be integrated within the wider health care system.

For more information about the report, and associated activities, including nation wide blogging, and webinar, see: http://healthcouncilcanada.blogspot.ca/2012/04/seniors-in-need-caregivers-in-distress.html

Alzheimer's Disease Family Caregiver Study Fact Sheet

This new survey released by the National Family Caregivers Association (NFCA) and Forest Laboratories, Inc. reveals what family caregivers fear most: first, their loved one's general health and physical decline, and second, the fear that Alzheimer's will take away their loved one's ability to communicate. Communication decline with their loved ones is not just a fear but a major source of stress, and also interferes with their ability to fulfill responsibilities/obligations as a caregiver.

Despite the stress associated with communicating, most caregivers surveyed adopted new ways to communicate with the person they care for (71 percent) and feel they have become better communicators themselves (76 percent). The most common alternative methods include observing facial expressions (84 percent) and body language (79 percent) and using pictures/photos (66 percent).

It is estimated that 5.4 million Americans have Alzheimer's disease and are being cared for by nearly 15 million unpaid caregivers -- including family, friends, partners and neighbors. Often the equivalent of a full-time job, 80 percent of at-home care for people with Alzheimer's or another dementia is provided by family caregivers.

Fact Sheet Download (286K PDF)
Tips to Communicate with Loved One (247K PDF)

Population Aging and the Evolving Care Needs of Older Canadians An Overview of the Policy Challenges

IRPP Study, no. 21, October 2011

As the first members of Canada’s baby boom generation turn 65, the official age of retirement, this study by gerontologist Neena Chappell provides a timely overview of the main health and social policy challenges presented by population aging in three areas: informal care, formal care, and prevention.

There is much argument and debate among experts as to whether Canada’s existing public programs will be sustainable with the increases in the number of seniors and their higher than average use of health and social services.

Chappell first looks at the evolving care needs, and shows that in the coming years, more seniors will depend on fewer individuals to provide the care they need.

Developing policies that support the needs of informal caregivers is important. In addition, there is a need for formal long-term home care as lower fertility rates, increasing rates of divorce, remarriage and blended families may affect the provision of care by family members. The assumption that medical care is the most appropriate means to ensure the health of an aging population needs to be re-examined.

This paper was published by the IRPP. Founded in 1972, the Institute for research on Public Policy is an independent, national, bilingual, nonprofit organization. The IRPP seeks to improve public policy in Canada by generating research, providing insight and sparking debate on current and emerging policy issues facing Canadians and their governments.


http://www.irpp.org/pubs/IRPPstudy/IRPP_Study_no21.pdf

How U.S. Older Adults Provide Care for Their Aging Parents, Adult Children, and Friends

Most research on the gender gap in unpaid caregiving in the United States has focused on young families. During the childrearing years, women provide the bulk of child care, although the time men spend caring for their children has increased in recent years.

As part of Population Research Bureau's 2010-2011 Policy Seminar series, Suzanne Bianchi, a University of California Los Angeles sociology professor, examined new research on caregiving in later life—a time when men and women may spend their time in similar ways as they enter their retirement years. The study, conducted with Joan Kahn and Brittany McGill of the University of Maryland, explored whether retirement and marital status made a difference in how men and women helped others. Specifically, they set out to learn whether men replaced paid work with time spent helping others after retirement and whether divorced people spent less time caring for kin, reflecting weakened family ties.

The 45-minute webcast presents the results of the study.

http://www.prb.org/Journalists/Webcasts/2011/us-aging-family-care-policy-seminar.aspx

Help Wanted? Providing and Paying for Long-Term Care

This new report from the Organisation for Economic Co-operation and Development (OECD) provides a comparative analysis of the common challenges and diverse solutions OECD countries are adopting to respond to the growing demand for long-term care services, particularly its implications for financing and labour markets.

Chapter 1 and 2 examine the growing demand for long-term care in the context of ageing societies, discuss demographic projections and their implications for long term care labour markets and expenditure

Chapter 3 and 4 discuss the role of family carers, the impact of caring on carers’mental health, poverty and labour market participation, as well as policies to support family carers.

Chapters 7 and 8 analyse, respectively, public and private coverage schemes for long-term care in OECD countries, while Chapter 9 discusses financing policies to improve access while keeping cost under
control.

Chapter 10 reviews options to improve value for money from long-term care services, and to manage more efficiently the interface between health and care.

The webpage for the report provides country data for OECD countries.

www.oecd.org/health/longtermcare/helpwanted

Providing for Older Parents: Is it a Family Affair?

This report, published by the California Center for Population Research, examined differences in how siblings provide care for their parents.

Using a 50-year longitudinal study of 10,317 men and women who graduated from Wisconsin high schools in 1957, the report analyzed whether parents received caregiving assistance and if so, which children provided the assistance. The odds of one child helping the parents (as compared to no children helping) increased by 30% when one of the offspring was a sister. Parents with two sons (but no daughters) were least likely to receive help. In addition, married men were significantly more likely to assist their parents.

To read "Providing for Older Parents: Is It a Family Affair?" by Esther Friedman and colleagues, visit:

http://papers.ccpr.ucla.edu/papers/PWP-CCPR-2010-012/PWP-CCPR-2010-012.pdf

Caring for Seniors with Alzheimers Disease and Other Forms of Dementia

The Data Development and Research Dissemination Division (DDRDD)announced the release of this document by the the Canadian Institute for Health Information (CIHI) on August 26, 2010.

This study uses data from both home care and residential care to profile seniors with dementia. It highlights the similarities and differences between those receiving home care and those living in residential care.

Available at: http://secure.cihi.ca/cihiweb/dispPage.jsp?cw_page=media_20100826_e

VideoCaregiving: A Visual Education Center for Family Caregivers

Videocaregiving.org is a new website from Terra Nova Films dedicated to "streaming" visual educational material to family caregivers.

The videos are designed to be short, simple and direct, and are able to be accessed easily anytime. Many of the videos follow a documentary format that uses real people and situations.

http://www.videocaregiving.org/index.php

Caring for a Parent Who Lives Far Away: The Consequences

The latest issue of Canadian Social Trends, from Statistics Canada provides a profile of caregivers who lived at a distance from parents to whom they were providing care.

The first section of this study provides a statistical profile of caregivers who live far from their parents and compares them with caregivers who live close by. The second section looks at the different financial, social and work schedule impacts that are associated with living relatively far from the care recipient.
Information is provided about the socio-economic characteristics of caregivers, the types and frequency of care provided, the use of additional sources of assistance, etc.

The primary focus is on the financial, social and work consequences associated with assisting a parent who lives far from a caregiver's place of residence.

http://www.statcan.gc.ca/pub/11-008-x/2010001/article/11072-eng.pdf

Informal Caregiver of Older Adults at Home: Let's PREPARE

New from the Try This: Best Practices in Nursing Care for Older Adults from the Hartford Institute for Geriatric Nursing, New York University School of Nursing.

The PREPARE approach provides the home care nurse with a tool to facilitate a successful transition of the patient to home care. The checklist may be utilized to assure that the essential components of informal caregiver preparedness have been assessed. If the informal caregiver is found lacking the necessary health care management skills the nurse, in collaboration
with the primary care provider and the multidisciplinary team, can implement interventions to provide the needed support.

http://consultgerirn.org/uploads/File/trythis/try_this_sp2.pdf

Innovations Clearinghouse on Family Caregiving

The National Center on Caregiving (NCC) at Family CaregiverAlliance(FCA) has launched the Innovations Clearinghouse on Family Caregiving, an online community promoting professional
knowledge around families in their caregiving role.

The goal of the Innovations Clearinghouse on Family Caregiving is to be an online community which will promote professional knowledge around families in their caregiving role.

This online community includes:

• a national, searchable repository of evidence-based interventions, policy efforts and emerging practices and tools with a primary focus on the support of family/informal caregivers;
• various interactive features that will offer educational and networking opportunities among professionals

The Innovations Clearinghouse primarily focuses on professionals seeking outcome producing practices and tools aiming to support informal caregiving.

The target audience for this project comprises policy developers and advocates, social workers, nurses and other related professionals working in the fields of health and social services.

Family/informal caregivers looking to educate themselves on emerging approaches to dealing with caregiver issues are also welcome to join this online community and explore its various pages.

Finally, students, researchers and anyone concerned about the issues facing families in their caregiving role, will find this site useful and educational.


http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=2319

Consultation on Family Caregiving, From the 2008 Home Care Summit

An interactive workshop and series of concurrent educational sessions were included in the program agenda at the 2008 Canadian Home Care Association Summit, attended by over 400 stakeholders from across Canada.

The special 2.5 hour workshop, Social Innovation and Family Caregiving, sponsored by HRSDC was held on the first day of the Summit (Oct 24th). Additionally, there were three concurrent sessions that
specifically addressed family caregiving issues within home care. The findings of the workshop form the basis for this report. An overview of the concurrent sessions are appended to this report.

http://www.ccc-ccan.ca/media.php?mid=226

Next Step in Care

To improve the working relationship between family caregivers and health care providers, the United Hospital Fund has launched the Next Step in Care website: http://www.nextstepincare.org/.

The website offers a range of guides and checklists most intended for family caregivers of persons with serious illness, with some specifically for health care providers, designed to make patients' transitions between care settings smoother and safer.

This website, the first stage of the campaign "Next Step in Care", will engage hospitals, nursing home rehabilitation facilities, and home health agencies, as well as patient advocacy groups and other family caregiver-focused organizations, in addressing a range of transition-related challenges.

http://www.nextstepincare.org/

Practical Tools for Caregivers and Professionals

In order to prepare current and future professionals in these fields, the AARP Foundation, in collaboration with the American Journal of Nursing, the Council on Social Work Education, Family Caregiver Alliance (FCA), and Rutgers Institute for Health Policy, received funding from the John A. Hartford Foundation and the Jacob and Valeria Langeloth Foundation for an interdisciplinary project on family caregiving of older adults.

The project brings together experts from the field of aging to advance the support of informal caregiving by identifying and further developing best practices in nursing and social work to help families care for older adults. The project lays the groundwork for producing a cadre of nurses and social workers who embrace a patient- and family-centered care perspective.

There are two charts:

For Caregivers: items that family caregivers can access and use themselves.
For Professionals: items intended to increase professionals' knowledge and skills or are intended for caregivers but require professional facilitation.

Befriending and Costs of Caring

This report describes the Befriending and Costs of Caring (BECCA) project which involved family carers of community-dwelling relatives with dementia in three areas in England. The project aimed to determine the effectiveness of providing a social support intervention in the form of an employed befriending facilitator, whose role was to provide emotional support, in addition to the usual care and services provided.

http://www.intute.ac.uk/healthandlifesciences/cgi-bin/fullrecord.pl?handle=20080314-12070542

Source: Intute

Family Caregivers --What they Spend, What they Sacrifice

The Evercare Study of Family Caregivers — What They Spend, What They Sacrifice was
undertaken to explore the extent to which family caregivers are paying for goods and services on behalf of the person they are helping. Surveys of family caregivers have revealed that many are assisting the care recipient financially, in addition to helping them with their everyday activities.

This study was undertaken to explore the financial aspects of caregiving for all types of family
caregivers, including spousal caregivers. The study included a national telephone survey to
examine costs of caregiving and their correlates of 1,000 family caregivers. In addition to the survey, a sample of survey respondents was recruited to participate in a 30-day study of actual expenses by keeping a diary of these expenses, as well as the opportunity costs associated with their caregiving responsibilities. There were 41 family caregivers who participated in the 30-day expense study
http://www.caregiving.org/data/Evercare_NAC_CaregiverCostStudyFINAL20111907.pdf