Support for Family Caregivers

Canadian Health Charities urge Federal Political Parties to Recognize and Support Family Caregivers

Canada Newswire

Mon Apr 4 2011, 10:45am ET

April 5 is Family Caregiver Day

OTTAWA, April 4 /CNW/ - Health charities and coalitions from across Canada have come together to pay tribute to family caregivers - the often invisible workforce that can be called to duty on a moment's notice. "On behalf of all who are, have been, or will be, involved in caregiving responsibilities, we ask our political leaders to use their influence to give voice and recognition to this important social issue," says Deirdre Freiheit, Executive Director, Health Charities Coalition of Canada.

"Governments have a vital role to play in raising awareness about the importance of caregiving and in establishing measures to better support this crucial group of people who contribute so much to our society," says Sharon Baxter, Executive Director, Canadian Hospice Palliative Care Association (CHPCA). "Family caregivers face very real challenges in accessing services, balancing responsibilities, supporting loved ones and maintaining their own wellbeing."

According to a February 2011 survey conducted by the Canadian Cancer Society, 84 percent of Canadians say increased financial support for family caregivers should be a priority healthcare issue in the federal election. "Many caregivers suffer financial difficulties as they deplete personal savings and take unpaid time off from work to care for a family member," says Dan Demers, Director, Public Issues, Canadian Cancer Society. "Canadians are greatly concerned about this issue and are looking to our federal political parties for solutions."

"Financial support for those who must take time off work is a critical component of effective policy for family caregivers," says Nadine Henningsen, Canadian Caregiver Coalition (CCC) President. "It is an important element of a Family Caregiver Strategy that the CCC believes is essential to engage all levels of government and sectors of society to support family caregivers." The intensity and length of caregiving can be significant, with 60% of caregivers providing care for more than three years.

The CCC's Caregiving Strategy includes:

Safeguarding the health and wellbeing of family caregivers and increasing the flexibility and availability of respite care

Minimizing excessive financial burden placed on family caregivers

Enabling access to user friendly information and education

Creating flexible workplace environments that respect caregiving obligations

Investing in research on family caregiving as a foundation for evidence-informed decision making.

The health charities and coalitions commit to working with all parties to shed light on the important work of family caregivers and to taking action to ensure that their contribution is noticed.

BACKGROUNDER for: Canadian Health Charities urge Federal Political Parties to Recognize and Support Family Caregivers

Caregivers and the Compassionate Care Benefit Program

Facts about caregivers:

According to Statistics Canada, between 2002 and 2007, the number of family caregivers in Canada aged 45 years and older increased by 30 per cent (over 670,000 people). In 2007, the number of family caregivers aged 45 years and older was 2.7 million

In 2009, the cost to replace family caregivers with members of the paid workforce at market rates (entitled to benefits, vacation, supervisory support, education etc.) in Canada was estimated to be between $25-26 billion (based on adults aged 45 and greater caring for those 65 years and older with long term health or physical limitations). (Hollander M, et al (2009) Who Cares and How Much? The imputed economic contribution to the Canadian healthcare system of middle-aged and older unpaid caregivers providing care to the elderly)

According to the CHPCA, more than 259,000 Canadians die each year, and most die in old age. With the aging of our population, by 2026, the number of Canadians dying each year will increase by 40% to 330,000. Each of those deaths affects, on average, five other people - family and loved ones who care for others.

A 2007 survey of health care in Canada (Health Care in Canada Survey 2007) suggests that 41% of Canadians use personal savings to support themselves when caring for loved ones at the end of life and 22% of these individuals miss one or more months of work.

A 2009 study published in Palliative Medicine (Costs associated with resource utilization during the palliative phase of care: a Canadian perspective) indicates that Canadian families frequently shoulder 25% of the total cost of palliative care due to costs associated with home-based services such as nursing and personal care services.

An Ipsos Reid study in 2004 showed that Canadians age 55+ estimated caring for a dying loved one at home was approximately 60 hours a week and approximately two thirds of Canadians said they could not devote the estimated number of hours per week to take care of a dying loved one given their current schedule.

In its August 2010 study, CIHI reported that nearly 20,000 family caregivers (16%) of seniors receiving home care reported distress related to their role. The rates of distress were significantly higher among those - Providing more than 21 hours of care per week (28%) and - Caring for seniors with symptoms of depression (32%).

About the Compassionate Care Benefit

The Compassionate Care Benefit (CCB) is part of Canada's Employment Insurance program. Successful CCB applicants can receive up to 55% of their average insured earnings, to a maximum of $413/week, over a six-week period to care for a family member at risk of death within 6 months. The six weeks of income assistance can be taken at once, broken down into one-week periods spread over six months or shared between family members. Applicants must meet the designation of "family member" (or a significant person who is considered to be 'like family') and provide a medical certificate from the doctor of the gravely ill family member indicating that death is imminent (i.e., within 6 months).

Facts related to the CCB:

In order to qualify, applicants must have worked a minimum of 600 EI-insurable hours over the preceding 52 weeks and be able to demonstrate that regular weekly earnings from work have decreased by more than 40 percent.

The CCB only covers six weeks, with a two-week waiting period, with no extensions for illnesses with a longer trajectory to death. The two-week waiting period can be challenging for low-income Canadians or those who are already experiencing financial difficulty due to the loss of income from a dying spouse.

The application process can be quite complicated for caregivers with a limited education or language barriers. As well, having the medical certificate filled out properly has been recognized as a barrier to a complete and successful application.

In a 2007 study, respondents who had applied for the benefit (whether successful or not) repeatedly cited difficulty accessing reliable and accurate information from a variety of sources, including websites and government offices. It also does not appear to be well-known to Canadians, particularly at the point of care, where this information would be most useful. (The Information Transfer and Knowledge Acquisition Geographies of Family Caregivers: An Analysis of Canada's Compassionate Care Benefit (Valorie A. Crooks, Allison Williams, Kelli I. Stajduhar, Diane E. Allan, and S. Robin Cohen)

Canadians may believe that health care is 'free' (or at the very least covered by taxes), however the cost of care for drugs, home-based services and other expenses can be staggering. Canadian families frequently shoulder 25% of the total cost of palliative care due to costs associated with home-based services such as nursing and personal care services (Costs associated with resource utilization during the palliative phase of care: a Canadian perspective, Palliative Medicine, Dec 2009).

The CCB can be particularly difficult for caregivers who are caring for patients with an uncertain trajectory of death, such as a child with a life-limiting illness. PedPalNet, a consortium of researchers working in pediatric end of life care, is currently studying parents who are caring for a child with a life-limiting illness to better understand their stress over time and the factors that help them survive through this experience (see: (www.pallpedsnet.ca?) for more information).

Canadian Cancer Society

Canadian Cancer Society fights cancer by doing everything we can to prevent cancer, save lives and support people living with cancer. Join the fight! Go to www.ifightcancer.ca to find out how you can help. When you want to know more about cancer, visit our website at cancer.ca or call our toll-free bilingual Cancer Information Service at 1 888 939-3333.

Soci?t? canadienne du cancer combat cette maladie en faisant tout ce qu'elle peut pour pr?venir le cancer, sauver des vies et soutenir les personnes qui en sont atteintes. Joignez le combat! Consultez www.combatpourlavie.ca pour savoir comment vous pouvez aider. Pour en savoir plus sur le cancer, veuillez consulter notre site Web ? l'adresse www.cancer.ca ou appelez notre Service d'information sur le cancer, un service gratuit et bilingue, au 1 888 939-3333.

Canadian Caregiver Coalition

Canadian Caregiver Coalition is a diverse group of national and provincial organizations from across Canada that works collaboratively to represent and promote the needs and interests of family caregivers with all levels of government, and the community. www.ccc-ccan.ca.

Coalition canadienne des aidantes et aidants naturels regroupe divers organismes nationaux et provinciaux, d'un bout ? l'autre du pays, afin de repr?senter et promouvoir d'une mani?re collaborative les besoins et int?r?ts des aidantes et aidants membres de la famille aupr?s de tous les ordres de gouvernement et de la collectivit?. www.ccc-ccan.ca

Canadian Hospice Palliative Care Association

Canadian Hospice Palliative Care Association (CHPCA) is the national voice for hospice palliative care in Canada. It is a bilingual, national charitable non-profit association whose mission is the pursuit of excellence in care for persons approaching death so that the burdens of suffering, loneliness and grief are lessened.

Association canadienne de soins palliatifs (ACSP) est la voix nationale du mouvement des soins palliatifs au Canada. Il s'agit d'une association bilingue, nationale et ? but non lucratif dont la mission est la recherche de l'excellence dans les soins aux personnes approchant de la mort, afin de soulager le fardeau de la souffrance, de la solitude et de la peine.

Health Charities Coalition of Canada

HCCC, a member based organization, is dedicated to advocating for sound public policy on health issues and promoting the highest quality health research. HCCC strives for excellence in health policy and seeks to ensure that the federal government and policy makers look to the Coalition and its members for timely advice and leadership on major health issues of concern to Canadians; and that they recognize the competence, commitment and contributions of health charities in improving the health and well-being of Canadians.