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A discussion on the future of informal caregiving is based on the roles and relationships between individuals and families, government, community and market, and how these components interact and change over time. The dynamics within and between these groups reflect changes in demographics such as: an aging population, fluctuations in the economy, technological advancements, shifts in individual preferences and social norms, and decisions on public policy. “Effective partnerships between caregiver organizations, researchers and practitioners are driving policy advances and leading to a growing recognition globally of the role of caregivers in economic and social development.”9
Current research indicates that declines in informal caregiving contributions result in either heightened spending on formal community care services or in costly and unnecessary institutionalization.10 Yet, besides these known costs, there are other social and economic considerations. These considerations include the direct implications on the social, health and economic status of caregivers themselves, all of which are potentially affected by the caregiving role. For example, informal caregiving also affects the right to participate in the workforce. Without protection and support, informal caregiving may represent a significant leakage of skills and talent from the labour market –- a labour pool which is projected to decrease in the coming decades.11
Looking forward to 2033, it is essential to ensure a new breadth in the approach to informal caregiving. The 2033 picture of informal caregiving does not reflect caregiving as an isolated family responsibility within which all losses and costs are expected to be contained and absorbed. As the global population ages, it is certain to have a significant impact on each social component. Some factors, such as the aging of baby boomers or the smaller size of their families cannot be changed. These are demographic trends which are fixed and relatively immune to intervention. However, other factors are uncertain and unpredictable such as the political, economic, cultural, social and technological trends. Changes in each present both risks and opportunities. But waiting until after change has occurred is often too late. By becoming open to action now, we can anticipate and respond to changes-to-come, and avoid significant expenditures and opportunity costs in other components of our social fabric. Strategies for informal caregiving, as presented in this report, are inter-connected and inter-dependent, thus all needing to be addressed to some degree in any subsequent provincial policy response.
Valuing informal caregiving suggests that it complements and completes the continuum of care and support for residents/clients and patients. Despite the challenges, there continue to be many optimistic predictions that many, if not most families, will continue to try to provide social support and personal care, even in the face of escalating economic pressures. How we anticipate and exploit future changes in social norms, economic activity and technological advancement are seen as essential to the task of managing the intersection of family with community, government and business.
Not everyone is equipped to be a good family caregiver and even though a family member may wish to provide care, they may not be the most appropriate person to provide that care because of a history of abuse, neglect or not having the mental/emotional/physical capacity. Baroness Jill Pitkeathley, the former director of Carers UK, has unequivocally stated that “there are some relationships into which caring should never be imposed,” and “it cannot be assumed that family members are equally suited to provide care for an older person ... this would indicate that those individuals and families who are thinking about taking on the caregiving role need to be assessed with respect to their relevant capabilities before such a responsibility is considered”12
Caring for a family member has long been viewed as the primary responsibility of the family in Ontario. Yet isolating this role overlooks the many intersections between family and informal caregiving in our social architecture. The responsibility for caregiving is a social one, with deep connections and dependencies with community, government and business. Does this vision of informal caregiving, within the context of a significant shifting demographic, reflect reality? Why does the previous and traditional vision of informal caregiving need a paradigm shift? A review of significant milestones helps to position both the need for a new vision of informal caregiving and the changes needed in the existing health system design.
Context
In 2004, the Ontario government indicated that "Instead of short-term fixes, we’re working to transform health care delivering effective care in the community…Ontarians will have access to around the clock family health teams…We will enhance home care so that patients have the choice of receiving care at home13. Miriam Hirschfeld also comments on the same need and challenge14, "Changing demography, epidemiology and social realities - such as urbanization, growing poverty, migration, changes in family structures, and growing participation of women in the labour force - make the search for long-term policies one of the most pressing challenges facing modern society".
Concepts such as informal caregiving and the caregiver continue to be used to refer to health care in the broader community. These are not new. However, some historical milestones show how central, important yet changing these concepts become to health care across all age groups as they are impacted by ongoing changes in social, economic, technological, environmental, legal, political, and shifts in demographics.
Noteworthy is the fact that home care lacks national standards of care resulting in a diversity of service responses involving public and commercial/business sectors. Despite the responses, responsibility for providing care for persons in their communities has remained, in large part, with the family, neighbours and volunteers. As care from informal caregivers is eroded, or threatened, a variety of stakeholders and community groups have mobilized to express their concerns.
The supportive care recommendation in the Romanow Commission Report15 lacked focus and priority for informal caregivers – provinces were urged to expand supportive home care but only ‘as resources permit’16. Supportive care became the responsibility of provincial governments but only as their discretion might dictate. So, by example, what did Ontario do?
The government took on the role of contracting out to nonprofit and for-profit homecare providers, the services required to support the home care sector, including the screening of patients/clients to assess service needs. Thus, 43 CCACs (14 today) were established across Ontario. However CCACs struggled to accommodate a growing demand for supportive care. Priority was given to ‘medically necessary’ services to accommodate the earlier hospital discharge of acute and sub-acute patients and their needs for care.
The reality is that informal caregiving is not easily defined or described as a simple act or skill. It is rooted in a complex social relationship. Uniquely, informal caregiving is needed not only in homes, hospitals and long-term care facilities, but also in hostels and ‘on the street’ where the homeless live17.
Noteworthy is the fact that traditional support networks are disappearing. Nuclear families have decreased by 18%. There are three times as many single person households, as households of 5 persons or more. 51.5% of the population was not married in 2006, outnumbering the married population for the first time since the census began. 42.7% of households had no children. For the first time, there were more households without children than with children. 1.5 million families, 1 in 4 families with children, is headed by a single parent, up 8%. Single parent families headed by men increased by 14.6%, more than 3 times the rate of single parent families headed by women18.
The 2006 Census enumerated 8,896,800 census families in Canada. Married couples constituted the largest group (68.6%), although their proportion has been steadily decreasing for the past 20 years. Common-law and same-sex couples are on the rise. In addition, Canadian adults are not marrying – just over 51% of adults (15 and over) were unmarried – up from 49.9% in 2001. Two-thirds (65.7%) of Canada's total of 5.6 million children aged 14 and under lived with married parents in 2006, a decline from 81.2% in 198619.
According to the 2006 Census20, Ontario had the highest proportion of married-couple families in Canada (73.9%). Common-law families represented only 10.3% of all census families, the lowest proportion in Canada. Lone parent families account for 15.8% of families. In 2006, 17,500 same-sex couples in Ontario were counted, representing 0.6% of all couples in the province. Over one fifth of same-sex couples in Ontario were married.
The context within which caregivers and care recipients interact matters. Context impacts and determines the parameters within which informal caregiving occurs and the quality and outcomes of the care given. To date, informal care is "unpaid, done with little formal training and based on an existing relationship"21. The question arises: How prepared and confident are informal caregivers in accepting and executing the requirements demanded in increasingly complex care settings in the home? Aronson has remarked that "Just as family, marketplace and voluntary solutions to home care users’ unmet needs are inequitably distributed so, too, are their capacities to engage in the physical, cognitive and political work of receiving and accommodating themselves to insufficient care"22.
Impacting the complexities and challenges of informal caregiving are: efforts to de-institutionalize care; changes in family patterns and lifestyles such as one-parent, common-law and gay/lesbian families; and the decreasing numbers of volunteers who traditionally have contributed many hours of care in a variety of programs and services throughout communities. In the context of these changes, is there a need to reexamine the services needed by informal caregivers?
The need to integrate informal caregiving in communities is not without substantial and complex challenges that must be addressed through careful and long-term planning. Common issues that remain include caregiver burden and frustration; lack of training/education and information for what is called ‘skilled caregiving’; the degree of stress experienced in relationships in the caregiving environment; a general decline in overall caregiver satisfaction and health; depression; reduced opportunities for social interaction outside the caregiving environment; and extra expenses and significant financial losses as caregivers give up employment to care for loved ones23.
The issues are substantiated by evidence from research. For example, 10% of Canadians report having a family member who requires constant care from a family caregiver. 27% of Ontario families have been providing constant care for over 2 years. One in six Ontarians report that constant care requirements have a major impact on the ability to earn family income. One in four caregivers has no help; one in four have paid help; sixty-one percent need more help. The average caregiver has spent twenty hours per week caring for four years; one quarter have spent forty hours per week. Thirty two percent also have children under 18 living at home. Fifteen percent of caregivers describe their quality of life as poor24. "Intentionally, or not, holding family caregivers accountable for the provision of care without adequate resources is completely unacceptable"25.
The foregoing challenges suggest direction for the types of supports needed by informal caregivers and those receiving care. "These include recognition of the value and importance of caregiving by families, communities, governments and businesses; information about supports that are available; training for caregivers to increase skills and sensitivity and for employers to foster managerial expertise; respite care; help with daily caregiving activities such as routine chores; and financial support to ensure family income security"26. Also, "governments can take a leadership role in leveraging supports from all sectors in society, thereby creating a more sustainable and equitable approach to caregiving in Canada"27.
Caregiver Cost
How much should caregiving cost us today?
Cost of caregiving for Canadian seniors 65+ extrapolated to 2007. The annual cost at hourly market rates for homemakers is $24,155,528,240. The annual cost at hourly market rates by type of provider is $31,298,054,77728.
The Caregiver in Ontario – A Portrait
figure 1
Using 2007 extrapolated costs from “Hollander (2009) Endnote (7)” and population projection from “United Nations World Population Prospects 2008”
What do our stakeholders say about Ontario’s informal caregiver?
It has been stated that the role of informal caregivers requires recognition and support through evidence- based policies and programs. Policies and programs need to be applied fairly to informal caregivers in both community and institutional settings. Informal caregiving, in its current state, leads to a high level of physical and mental stress. 46% of caregivers experience stress. 14% experience physical discomfort or physical pain. 15% report that people for whom they care are verbally or physically abusive. 19% were frail, disabled, or needed care themselves.29
In light of the above, collaborative and consultative sessions and strategic conversations were undertaken by the Ministry of Health and Long-Term Care (MOHLTC) to address the contextual issues, heighten the quality of the care experience for informal caregivers and care recipients, and help create informal caregiver supports that would sustain home care within the parameters of quality and economic realities.
In September 2008, the MOHLTC initiated the “Caring-About-Caregivers” project to explore long-range ideas to respond to the emerging challenges faced by caregivers. The initiative was undertaken by the Long-Range Scenario Planning Unit of the Health System Strategy Branch (HSSB) of the MOHLTC through the ‘Caring-About-Caregivers’ initiative, and was structured around three purposes. These were to:
- implement the LRSP methodology to identify and address gaps and issues faced by informal caregivers;
- identify robust strategies that support informal caregivers and that are relevant despite the unpredictability of the future; and
- identify areas for informal caregiver policy development based on recommendations drawn from evidence.
This report is the tangible outcome of an Long-Range Scenario Planning (LRSP) initiative that is unlike some earlier study initiatives that often lacked consultation with providers, recipients of care, advocates and academics within a collaborative and consultative environment.
It helps to position further research and action to advance caregiving within a newly visioned context that carries informal caregiving in Ontario to 2033.
Methodology
About Long-Range Scenario Planning (LRSP)
Long-Range Scenario Planning recognizes that the future cannot be predicted. However, we need to make long-term choices informed by strategies that are robust enough to succeed in the face of unpredictable change.
The LRSP process is a collaborative effort which engages opinion leaders, practice leaders, planners and decision-makers across the system, informed by subject matter experts and available data. It involves the identification of expected major trends, drivers and challenges over the next 25 years. It blends those elements into extreme but plausible scenarios. Those scenarios are then tested against strategic responses, to identify critical future turning points.
About Scenario Integrity
An important element in long-range scenario planning is testing the plausibility and integrity of future scenarios, and robust strategy themes that are common across scenarios.
There is a risk of unintentionally excluding some demographic cohorts when looking for robust themes, or those themes with the broadest effects. Marginalized groups run the risk of becoming even more marginalized if the effort is not made to incorporate their perspective.
To address this, the Caring-About-Caregivers project tested the scenarios, themes, and strategies with key expert informants from a selection of cohorts which are often underrepresented in policy decisions. As an example of this process, leaders and experts from the Lesbian, Gay, Bisexual and Transgendered (LGBT) community and from First Nations communities were consulted in a separate process, which supplemented the LRSP exercise. These and other experts’ feedback on the robustness of stratagems is reflected in this document. While this is not a comprehensive exploration of how these stratagems will affect these communities, it is hoped that this additional consideration will improve the inclusiveness of resulting policy decisions.
About the Caring-About-Caregivers Initiative
The expectations our society holds of caregivers tend to be framed in dated scenarios: intact nuclear families; discretionary time; sufficient workplace benefits with coverage and flexibility; extensive community networks; and accessible, responsive and healthy non-profit agency networks. The care burden is also changing as we move costs away from a formal and publicly funded system and towards the individual. Where are the long-term opportunities to redress this growing imbalance?
Long-range scenario planning enables an exploration of plausible futures over the next 25 years. LRSP was used to determine areas of promise as identified by over 300 participant stakeholders and experts. These areas of challenges and promise include:
- how we manage and share information;
- how we leverage technology as an enabler;
- how we consider the social and economic importance of care and caring; and
- how we enable a tri-sectoral (government, business and non-profit) wraparound model of supports for the individual caregiver, and for those who receive care.
This report builds on the robust common themes from the scenarios, the policy implications of these themes, and the policy and societal actions that can be taken in the short- and long-term.
LRSP in Action - Consultation Process
figure 2
Caring-About-Caregivers Process Timeline
Trends
The Caring-About-Caregivers (CAC) Project began in September 2008 with three streams of work to identify major caregiver themes and trends with unpredictable impact on caregivers:
- Literature scan on caregivers to identify dominant themes and existing research (MOHLTC Research and Planning Unit)
- Environmental scan for major trends with unpredictable impact on caregivers (CAC team)
- Interviews with 30 health leaders, experts and researchers to validate the themes, the trends and their potential impact on caregivers (CAC team)
figure 3
Trends and Drivers Impacting Caregivers
Results of the three work stream was compiled into a PESTEL (Political, Economical, Social/Demographic, Technological, Environmental, Legal) Primer on major trends and their potential impact on caregivers into the future (See Appendix – Project Phase 1 - 2 Products: PESTEL Primer).
Implications
In October 2008, 100 health leaders, experts, researchers and caregivers participated in two three-hour workshops to identify major trends and their implications for caregivers. The PESTEL Primer was circulated in advance. Participants were asked to review the primer and identify what they felt were the top trends and implications for caregivers. At the workshops, participants were first presented with a video presentation, "In 1983" showing what Ontario and the world looked like 25 years ago. They were then given an overview of the PESTEL Primer, and asked to participate in a "Wicked Questions" session to identify inherent paradoxes and contradictions in the system and their work. They were also asked to identify the top trends and implications for caregivers. Facilitators recorded the workshop sessions. The participants were also given workbooks to record their thoughts. Twenty key informants and experts were also interviewed on the same questions.
Scenarios
The transcripts from the Implications Workshops and the workbooks, as well as the interviews, were consolidated and thematically coded by the project team in 3 passes. The top trends and their respective implications were analyzed and clustered into 4 groups of plotlines. Four narrative scenarios about caregiving 25 years in the future were developed (See Appendix – Project Phase 3 Products: Future Scenarios of Caregiving). These scenarios were tested by the team and selected participants for plausibility and relevance to the topic of caregivers.
In November 2008, 120 health leaders, experts, researchers and caregivers participated in two three-hour workshops to identify strategic responses to the future scenarios. The scenarios were circulated in advance.
Participants were then asked the following for each of the four scenarios:
- What is desirable, and what is not?
- What strategy, policy, program or public infrastructure is needed in the scenario to make it viable for caregivers?
- What strategy, policy, program or public infrastructure is needed today so that the features described in (2) are viable?
- Promising examples or ideas?
Facilitators recorded the workshop sessions. The participants were also given workbooks to record their thoughts. Thirty key informants and experts were also interviewed about the same questions.
Robust Themes and Options
The transcripts from the Implications Workshops and the workbooks as well as the interviews were consolidated and thematically coded by the project team in 3 passes. The top strategy themes were identified together with their respective promising examples or ideas. A further literature scan was conducted to validate the strategic themes, examples and to identify additional options. The results were summarized in the Policy Implications discussion paper (See Appendix – Project Phase 4 Products: Robust Themes and Ideas).
8 strategic themes 23 strategic options were identified in the discussion paper:
Adapting to the Changing Demographics of Family
1. Reconstructing the Policy Definition of “Caregiver”<
2. Ensuring a System of Protection for Care Recipients
The Importance of Social Networks: Changing Forms of Social Connection
3. Strategic Investment in Neighbourhood “Hubs”
4. Strategic Investment in Social Cooperatives
5. Building a System for Social Networking
6. Implementing “Good Neighbours” Legislation
Valuing Caregiving
7. A Public and Political ‘Voice’ for Informal Caregivers
8. Strengthening Ontario’s Awareness of the Informal Caregiving Role<
9. Expanding the Meaning of “Best Employer”<
10. Reanimating Volunteerism for the 21st Century
Improving the Scope and Efficiency of Informal Caregiving through Technology<
11. Stimulating the Development of Technology-Enabled Systems<
12. Using Virtual Technology to Reduce Information Deficit
Timely Access to Reliable Information
13. A Structure to Enable System Navigation 14. A Provincial System of Caregiver Education
Promoting Opportunity and Choice for Support
15. Creating a Formal Process for Caregiver Assessment
16. Empowering the Choices of Informal Caregivers through Self-Directed Care
17. Building a System of Support through Stable and Efficient Investments
18. Adopting a “Triple Bottom Line” (Social, Environmental, Economical)
19. Building a System of Support through Flexible and Portable Hubs
Flexible Benefits and Supports: Competing and Caring in the Context of Shifting Demographics
20. Initiating a Government – Business Dialogue for Informal Caregivers
21. Building Benefits and Employment Protection for Informal Caregivers
Promoting Equity and Enabling Vulnerable Populations
22. A Provincial Program with ‘Universal’ Benefits and Protections<
23. Strengthening Outreach and ‘Wraparound’ Services for Informal Care Needs of the Vulnerable
Based on an analysis of the themes and options, the project team designed a questionnaire to survey internal and external stakeholders in order to validate and prioritize the strategic options as presented in the discussion paper.
Questions for the questionnaire were developed in February 2009 in order to prioritize the strategic options based on both internal and external stakeholder feedback. Each respondent was asked to reply to the following questions:
- Which of the strategic options do you believe are compelling and also hold the greatest potential for significant change?
- Are you currently engaged in initiatives; developing initiatives; or aware of the initiatives of others that support the strategic options in the report? Please provide contact names for follow up. 18
- Are you currently engaged in initiatives; developing initiatives; or aware of the initiatives of others that invalidate the strategic options outlined in the report?
- Which strategic options would benefit most from public policy development work now?
- Are there other long-range or catalytic options that you would like to recommend?
The brief open-ended questionnaire was distributed to participants via email and in person through discussion groups. A copy of the strategic option draft discussion paper was distributed with the questionnaire.
Questionnaire Sample: Respondents were participants in earlier discussion groups, key informants in the field and representatives from the Local Health Integrated Networks (LHINs) and Community Care Access Centres (CCACs). The consultation process was held over a two month period. 310 questionnaires were distributed with 76 returned. This represents a response rate of 25%.
Questionnaire Data Extraction: Numerical Responses for recommended and priority options were recorded if the strategic option number was listed. If the strategic option was described, it was classified and coded.
Text explaining the reason for preferences or alternate suggestions was categorized and marked for extraction. Similarly, text identified as offering a new option or additional comment was marked, coded and extracted.
Questionnaire Coding Frameworks: Coding frameworks were developed for the following content areas in order to identify whether respondents shared the same opinion with regard to:
- The reasons why Strategic Options were preferred
- The content for: a) Variations of the Strategic Options; b) New Options; and c) Other Comments
Plan for Analysis of Questionnaire Responses: Frequency tables were developed for both recommended and preferred strategic options. The 8 themes from the discussion paper were ranked by average frequency of the endorsements of the individual Strategic Options for each theme. Themes were then ranked by average frequency.
Feedback related to each option was integrated into the text. Strategic Options which were ranked above the median of 11.5 were revised based on this input and from research and program examples provided by respondents to the questionnaire. Options with similar themes which were ranked above the median were merged for further clarity. Feedback received on redundancies in the options was also taken into account (See Appendix – Project Phase 5 Products: Prioritization results).
Follow-up discussions with project participants and partners were then conducted to help finalize priorities. Four final major themes emerged as priority public policy development areas.
- Adapting the Definition of Caregivers to Changing Families and Communities
- Competing and Caring in Shifting Economics and Demographics
- System Navigation and Education
- Building on Social Networks
These are detailed as recommendations in the following sections of the report.- Recommendations
Read the Reports
"Caring About Caregivers - Final Report"
"Caring About Caregivers - Project Overview and Update"
click on the above links to access the reports
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