H O U S E B O U N D
The Voices of Full-Time Family Caregivers
PROJECT SUMMARY
Care Watch Toronto is a network of individual volunteers and grassroots organisations, with the central purpose of providing a strong consumer voice in the organisation, delivery and quality of in-home care.
The impetus for the current project on caregiving arose from the Care Watch PhoneLine, which operated from 1997-99, with support from The Ontario Trillium Foundation. The PhoneLine gave to those receiving in-home care, to caregivers, to concerned family members and others, a confidential way to relate their experiences with the care being provided.
An unanticipated finding of the PhoneLine was that in addition to the expected calls from care recipients, there were many calls from caregivers. We did expect, and analysis of our calls confirmed, that family caregiving is preponderantly performed by women and we felt compelled to bring the voices of these and women like them into the policy debate on caregiving. In the summer of 2000, we approached Status of Women Canada for funding to enable us to bring these family caregivers together. Our intention was to give them an opportunity to articulate the needs and concerns that directly impact on their economic security and overall well-being; and to provide them with an opportunity to suggest measures that will address these needs and concerns. In the following pages we present a summary of our findings.
Why Care About Caregivers?
In Canada, estimates of the amount of in-home care performed by families and other “informal” caregivers range between 80% and 90%. “Formal” care, provided by workers from the health care and social service systems, makes up the balance. Shifts in Government funding policies, as well as other social and economic changes have, however, strained the amount of “formal” or paid care available, with families immediately feeling the effects of these changes. These pressures impact not only on those receiving care, but also on the many hundreds of people who provide care to their families.
There are no provisions to compensate family caregivers despite the fact that many may have to leave paid employment, losing a high-powered career or “just a job” to take care of an elder or ailing relative. The result is that, their pensionable earnings are reduced, so that not only their immediate, but also their and their family’s future economic security is compromised.
In Ontario, the recent freezing of already inadequate home care budgets is leaving the public system, more than ever, unable to provide adequate care. Family members and friends, those we call informal or family caregivers, now have even more pieces to pick up. Most of them will try their best to do so, whatever the cost to their own health or their own economic security
The Caregiver Project
The Voices of Full Time Family Caregivers
Our objectives for this project were:
§ to promote policies and institutional changes related to family caregiving.
§ to empower unpaid caregivers from diverse backgrounds, by helping them to develop an increased understanding of the policies and programs that impact on their lives and to think constructively about how beneficial change can be brought about.
§ to promote the establishment of respite programs more responsive to the needs of both caregivers and care recipients.
§ to identify relevant new models of respite for family caregivers.
Our hope was that we could:
§ help promote onto the public agenda the policy changes needed by family caregivers, both for their economic security and for their physical and emotional well-being.
§ raise awareness of the necessity to make respite programs more supportive.
§ demonstrate the need for improved training programs for in-home respite workers and compensation packages that will encourage personal support workers to acquire this specialised training.
§ highlight the need for the establishment of one or more Alzheimer’s Day Care programs with flexible hours of operation.
§ identify and support the development of one or more relevant new models for respite programs for family caregivers.
We decided to concentrate most of this work in Toronto in order to focus on the unique and complex problems for caregivers in a large urban centre. We were, however, also interested in the experiences and insights of caregivers living and coping outside of such a centre and arranged to speak with caregivers in Muskoka/Parry Sound and Hamilton.
The Caregivers – A Profile
Eighty-one full-time current and former family caregivers participated in eleven focus groups and in-depth interviews over the spring and fall of 2001. Eight of the groups were with women whose first language was English and three groups were with Portuguese, Vietnamese and Tamil speaking caregivers. While most were from the City of Toronto, a number came from Muskoka/Parry Sound and from the City of Hamilton.
The participants' ages ranged from the early 30’s to over 80 years. Their health status was fairly good, however a number reported that they had one or more of their own health problems at the same time that they were caring for their family member.
Generally, the fact that all of the participants in the study were primary caregivers for at least one person, precluded their having any other employment. Several participants did however have care arrangements, paid and unpaid, that allowed them to work part time or from their homes.
The needs of those cared for by our participants included both physical and cognitive impairments and often, multiple conditions. The care recipients’ ages ranged from 5 to 93 years. Their relationships to the family caregivers were those of spouses, siblings, parents and children. None of the study’s caregivers were looking after friends.
While we did not perceive significant differences between the experiences of rural and urban caregivers or different ethnic groups, there were differences between those who were caring for their disabled or ill children, people suffering with Parkinson’s Disease or acquired brain injuries and the other caregivers in the study. This was certainly due in part to the long duration of care as well as the gravity and complexity of the medical and behavioural ‘diagnoses’ of the care recipients.
Most of the women we spoke to had some help from either the formal home care system or from family or friends. Even those receiving such supports, did not, necessarily feel relief from their sense of isolation and the stress of being fully and finally responsible for another's life.
The Experience of Caring “24/7”
The Burdens and Joys of Caregiving
For this study, we defined full-time caregivers as those who lived in the same household as the care recipient and either provided all care directly and/or had the responsibility for arranging any substitute or auxiliary care.
The perceived burden of this responsibility depended on many factors, including:
· the personalities of the caregiver and the care recipient,
· the nature of their relationship,
· the duration of care,
· the seriousness of the illness or disability of the care recipient,
· the health of the caregiver, and
· the quality and quantity of available formal and informal support.
While we were prepared to hear about the difficulties encountered by full-time family caregivers, we realised that in many, if not most cases, the caregiver's role had been taken on voluntarily and provided gratification as well as imposing burdens. While clearly rewards were found in giving care, in the absence of adequate support, the burdens often outweighed the joys.
Caregivers in our groups talked about the quality of the formal support they received. Services came from Community Care Access Centres (CCACs) (through their contracted agencies), from both acute and chronic care hospitals and nursing homes, and, for those who could afford it, from privately paid in-home care providers.
The issues that most reflected the quality of care our caregivers received from formal sources were:
ü the attitude of those administering the system and of those directly providing the care,
ü the organisation and delivery of services,
ü the competence of care providers to deal with the complexity of care required,
ü the continuity of the providers (the same person coming all or most of the time), and
ü the adequacy (or inadequacy) of the hours of service provided.
The Impact of Giving Care
Participants all indicated that their roles as caregivers had impacted substantially on their physical and emotional health, as well as on their financial security. The social expectation that women should naturally care for family members clearly engendered feelings of guilt about saying anything that might appear to be complaining. This and other factors impacted on the caregivers in a number of ways:
Physical Health
Many spoke about the deterioration in their physical health, whether it was an exacerbation of pre-existing health problems or the onset of physical problems they had never experienced before.
Emotional Wellbeing
Isolation and a sense of loss, were obvious sources of emotional stress, however a number of other significant factors emerged from the focus group discussions. These included:
§ having to provide constant emotional support
§ having too much responsibility for medical procedures
§ fears for one’s own physical safety
§ fear of not being able to continue the caregiving role
§ changes in family relationships
§ depression
In the face of the many negative physical, emotional and financial impacts on those who provide full time care to family members, we might have expected that they would all be actively demanding help from the public system. This did not prove to be the case.
The same guilt feelings that make it difficult for caregivers to complain, also showed themselves in a reluctance to ask for help. For some this is admitting personal weakness, an inability to cope, or, in other words, failure.
Financial Strains
Many women leave paid employment to provide care to family members. Not only does this impact on the present and future financial ”health” of caregivers, it also has serious implications for the future of health and social services. A number of women in this study talked about the loss of present and future income from jobs and careers they left behind. Many felt poverty to be their almost inevitable future. Other financial burdens discussed by the caregivers included the need to make expensive home renovations, to buy assistive devices and to purchase more hours of “formal” care than those provided by the publicly funded home care system.
What Caregivers Need
In our focus groups we asked the caregivers to open their minds to imagine a better system or other services that would help them. We gave them unlimited imaginary funding and policy scope. Some interesting ideas emerged from this exercise. These included offering caregivers a “bank” of respite care days, limiting the number of hours of family provided care to 40, providing round the clock care to the ill or frail family members of those in the paid workforce and to elderly family members caring for an elderly spouse or sibling.
As can be inferred from this "wish list", what caregivers want and need most is RESPITE.
For most of the caregivers this meant a publicly funded “user centred” system of care, that served and was accountable to both care recipients and caregivers, not just to the budget-makers and bureaucrats of the "system".
Caregivers clearly understood, however, that for them to have adequate respite, the very nature and delivery of our health and social programs must be changed. Only an altered system would allow them to take restorative time away from their caregiving duties, with the confidence that the care being provided for their family member was of the same high quality they themselves normally provide.
A Brief Look at Some Care Options
The need for adequate respite confirmed Care Watch Toronto’s experience prior to this project and we undertook to look at care options contemplating some “best-care” models.
In our review we found a number of interesting and innovative options beside the conventional respite care that is “delivered” out-of-home in institutions or in-home by support workers from the “formal” system. These included out-of-home options that, unlike conventional chronic care settings operate more like “care hotels” or holiday camps. These seem to work well as they offer both time away for caregivers and a “holiday” experience for care recipients. Other out-of-home options include group homes and care-sharing or exchanges analogous the children’s play dates which allow caregivers to support one another and provide a more “home-like” setting to care recipients.
Drawing on our previous experience and on that of the caregivers in this study, the best “model” of in-home care is provided by a fully trained, experienced care professional. He or she looks not only to the instrumental and therapeutic needs of the care recipient, but to their need for appropriate activity and companionship. This allows the care recipient to remain in familiar surroundings and the family caregiver the confidence to leave their loved one for a few hours, or even days, to get some needed rest and recreation.
In considering respite options we concluded that it is not just a single individual model of care, however creative, that is ultimately needed. What is required is a good “system” of care options that address both the changing needs of the caregiver and care recipient in equal balance. Our recommendations to follow reflect these findings and other needs expressed by the participants in this study.
Our Recommendations
This study and our ongoing work with care consumers have shown clearly that informal care giving is a grossly undervalued activity. At present our health care system fails to acknowledge, either in pay, policy or program, that the full-time family caregiver is a valuable national resource. To address this Care Watch Toronto recommends:
1. A publicly funded National Home Care program be created as an extension of the Canada Health Act.
2. A national advertising campaign be undertaken in the media and other sources so that information about the needs of caregivers, about family care and respite options are well known to all Canadians. Vulnerable people should not have to work so hard to find the help they need.
3. A careful analysis must be undertaken of the costs of inadequate caregiver support, both financially and in terms of the health outcomes of care recipients and caregivers. Replacement costs include not only additional publicly funded home care, but also the even greater cost of alternative institutional care, as well the expenses to the health system when a caregiver's health breaks down under the strain. Only with recognition of the huge costs involved in replacing them, can governments contemplate seriously the need to fund an adequate level of support for family caregivers.
4. A system of Caregiver Centres should be established that would give caregivers and their family members help in coordinating care through easy access to information on services, counselling, peer support and respite.
5. Incentives must be provided for health care practitioners, (specialists, family practitioners etc.) to have additional staff or information that will support caregivers.
6. Funded Caregiver Support Groups or at least funded respite that allows caregivers to attend meetings, especially when they are going for education and training that assists them with their work.
7. Workplaces be encouraged to offer support for employees requesting leave to care for family members.
8. Increased in-home respite should be provided for family caregivers. To function as respite, care must be delivered by properly trained workers, who are fairly compensated for their work and extra training.
9. A system of user centred respite care options that would address the wide variety of care needs in both settings for care and the amount of time available. Information about these options must be widely disseminated.
10. Family caregivers should be compensated for their work to encourage and preserve their economic security and the security of their families. This could include, but not be limited to, the creation of:
§ drop out provisions in the Canada Pension Plan analogous to the drop-out provision for women caring for children under seven.
§ leave provisions analogous to Employment Insurance parental leave, including cash allowances and job security for short term leave to care for a dying relative.
§ an improved system of tax incentives for caregivers.
§ appropriate self-directed funding programs, allowing caregivers the option of managing and purchasing a personally chosen, system monitored “basket” of services for their family members.
11. Funding for community care must include wages and working conditions that adequately recognise the contribution of professional and non-professional staff and that compare favourably with wages and working conditions in both hospitals and long term care facilities.
Conclusion
We hope that this look at caregiving, hearing caregivers speaking for themselves, will contribute to improving their lives and those of thousands of others who are often sacrificing their own health and economic security to provide care for their family members. If we continue to expect Canadian women to do this work, alone and unpaid, our society will pay the cost in other ways. This failure to fully recognise the contribution of caregivers must be redeemed and adequate support for them constitutes one of the most significant factors in ensuring the sustainability of our whole health care system. Only determined national leadership can end the current intolerable buck-passing between the provincial and federal governments and the consequent dangers that threaten our public health care system. We need to recognise and support family caregivers and we need to do it now.
Care Watch Toronto
March 2002
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