Caring for Caregivers of High-Needs Older Persons

SPECIAL FOCUS ON FAMILY CAREGIVING

Caring for Caregivers of High-Needs Older Persons Natalie Warrick, Allie Peckham, Jillian Watkins, Marija Padjen and A. Paul Williams

Abstract The Caregiver Framework for Seniors Project (CFSP) is led by the Alzheimer Society of Toronto in partnership with the Toronto Central Community Care Access Centre and six community support service agencies. This ground-breaking initiative aims to increase caregiver resiliency and capacity to continue to provide care through a platform of supports. In the CFSP, care coordinators negotiate flexible support packages in consultation with caregivers to meet their selfreported needs and the needs of care recipients. This paper presents the findings from a multi-stage, mixed-methods formative evaluation of the CFSP.

T

his paper documents the Caregiver Framework for Seniors Project (CFSP), which supports “at-risk” caregivers of high-needs older persons in Toronto. The Project is led by the Alzheimer Society of Toronto (AST) in partnership with the Toronto Central Community Care Access Centre (TC CCAC) and six community support agencies. It is funded by the Toronto Central Local Health Integration Network (TC LHIN) under its 2011–2114 Strategic Plan to ensure high-quality care oriented around people and communities. We begin by detailing the design and implementation of the CFSP; we then present key findings from a formative evaluation conducted by the authors and conclude with lessons learned. In doing this, we argue that caregiver support initiatives are increasing vital, as growing numbers of older persons with 24

Healthcare Quarterly Vol.17 No.3 2014

multiple chronic health and social needs live longer in community settings where informal caregivers – family, friends and neighbours – provide the bulk of everyday emotional, instrumental and personal care (Peckham et al. 2014). By investing in caregivers, such initiatives are also an investment in the well-being, quality of life and independence of cared-for older persons, and in the health of increasingly stretched healthcare systems, as they promise to reduce the likelihood of unnecessary “default” to hospital and residential long-term care (LTC). However, the experience of the CFSP suggests that to be effective, such initiatives need to be carefully planned and managed; most importantly, they have to be sufficiently flexible to help caregivers respond to changing needs and circumstances, not only in the lives of caregivers and cared-for persons, but in evolving formal care systems. The Caregiver Framework for Seniors Project

The Caregiver Framework for Seniors Project (CFSP) aims to increase the resiliency and capacity of highly burdened and stressed informal caregivers to encourage them to continue to care for high-needs older persons who may be near the point of placement into residential LTC. In the CFSP, trained care coordinators engage informal caregivers to provide intensive case management and ongoing counselling and, using discretionary budgets of about $1,500/caregiver/year, co-create flexible packages of caregiver supports.

Natalie Warrick et al. Caring for Caregivers of High-Needs Older Persons

Who the CFSP Targets

What the CFSP Did

Informal caregivers in the catchment area of the TC LHIN were eligible for the CFSP if they provided at least 10 hours of direct care per week and were “at-risk” of burnout. No co-residence or means testing restrictions were applied. Risk factors included physical, emotional, social or financial pressures that could lead the caregiver to withdraw, in turn increasing the likelihood of premature or avoidable hospitalization or LTC placement for the cared-for older person. Caregiver risk was measured via the RAI-HC (Resident Assessment Instrument – Home Care), a standard home care assessment tool, which, although focused on the needs of care recipients, includes some items on caregivers. Three of these items record whether caregivers feel they are unable to continue in the caregiver role, are dissatisfied with the supports provided by others to the care recipient or express anger or conflict because of the demands of caring. When combined, responses to these three items contribute to an index of caregiver distress (Cousins et al. 2002); according to their scores on this index, about 7 in 10 caregivers participating in the CFSP qualified as “highly distressed.” In total 406 “at-risk” caregiver and care recipient “dyads” participated in the CFSP following its inception in the latter half of 2011; of these, 65 received renewed funding in the second and third years of the project. Of cared-for older persons in the initial cohort:

The CFSP provided Sara with funds to hire a family friend to provide respite, as this friend spoke the family’s primary language, and Sara knew that Andre would accept her care. Sara’s care coordinator confirmed that in this instance and in similar cases, the CFSP had reduced caregiver stress and increased resilience. As Table 1 shows, the CFSP provided a flexible mix of counselling, in-kind services and supports and cash that could be used by the caregiver to purchase agreed-upon services directly. The CFSP thus spans two of the streams identified by Keefe (2011): direct financial assistance and in-kind services including referral and counselling for caregivers and enhanced education for both care coordinators and caregivers. TABLE 1. Interventions provided in care plans %* Informal respite care (relative, friend, neighbour)

Usually paid by the hour to enable caregiver to rest or attend to medical needs Healthcare supplies

Incontinence supplies, diabetic supplies, caregiver and care recipient medications

Case Study: Sara

The following composite vignette paints a portrait of a typical caregiver/cared-for person dyad in the CFSP: Sara (81) says, “providing care is a full-time job.” Her husband, Andre (82), recovered from colorectal cancer eight years ago and was recently diagnosed with Parkinson’s. Sara wakes every morning at 5 AM to groom and dress Andre, change his colostomy bag and wash him. She prepares special meals throughout the day that require her to blend his food and mix in his medications. Her only respite comes from two daily visits from a personal support worker.

25

Social activity/self-care

Care recipient and/or family to attend events together

• More than half (57%) spoke a language other than English; • More than one-third (36%) recorded “very high” MAPLe (Method for Assigning Priority Levels) scores, a measure of needs derived from the RAI-HC widely used to determine eligibility for home care and residential LTC in Ontario; • Nearly two-thirds (61%) were fully dependent on others to perform ADLs (activities of daily living such as bathing and toileting); and • About the same proportion (61%) experienced severe cognitive impairment.

35

24

Personal support worker

PSW provided by the CCAC, or an agency serving their catchment area

23

Equipment

Hospital bed, Hoyer lift, stair glide, commode, mattress, wheelchair, walker

20

Bill payment

Payment of electric bill, PSW courses to improve caregiving or job marketability

17

Physiotherapy

Payment for the caregiver or care recipient not covered under OHIP

16

Transportation

Taxi chits to attend medical appointments

16

Home help

Meals-on-Wheels, pest removal, cleaning services, snow removal, home repair

12

Adult day program

Fees for initiation or addition of days for caregiver respite

8

Short-stay respite in a residential facility

Temporary move to LTC while caregiver recovered from surgery

7

Notes: *% column does not total 100, as many plans include multiple items.

Healthcare Quarterly Vol.17 No.3 2014 25

Caring for Caregivers of High-Needs Older Persons Natalie Warrick et al.

Direct Assistance

The CFSP offered caregivers a considerable degree of flexibility and personalization. For example, the project could arrange for caregivers to receive respite; alternatively, caregivers could opt to receive cash to purchase respite care on their own. Caregivers appreciated that they could use funding to purchase services such as cleaning and pest control to make the home environment safer and more livable. In-Kind Services Counselling and case management

Caregivers in the CFSP also received solution-focused counselling and case management around care options and planning. Several studies have documented long-range positive effects and sustained benefits of counselling (Mittelman et al. 1995; Mittelman et al. 2006; Pinquart and Sorensen 2006). Similarly, enhanced support to caregivers in locating and coordinating services has proven to be highly effective at providing relief to caregiving burden. Education and referral

Training in problem-solving therapy (CARERS Program, Chiu et al. 2013) provided a practical approach for framing the conversation between caregivers and care coordinators (reported in detail elsewhere; see Warrick and Hebert 2012). Caregiver education also included resource sheets on how to access support and appropriate disease-specific literature. How the CFSP Was Delivered

Care coordinators and caregivers jointly designed individualized care plans keeping in mind the annual $1500 budget. Cash could be used to purchase a range of services, which could include hiring a friend, as well as for gym memberships or massage therapy.

care coordinator burden, it added significant administrative load for project administration. For instance, where services were arranged by the project, service agreements were signed with vendors and a defined billing process was agreed upon. Payments were scheduled as one-time lump-sum payment for the entire year – this was the preferred method, as it saved the project office considerable time – or on a monthly billing cycle. In all cases involving the transfers of funds for items such as taxi chits, vouchers, gift cards, pre-loaded credit cards or cash, the care coordinator obtained a signed undertaking from the caregiver that the funds would be used only for the agreed purpose (Warrick and Hebert 2012). Bulk purchasing rates were negotiated by the CFSP with equipment and medical suppliers, and alliances were established with community service providers and vendors to reduce costs. Mid-Course Adjustments

We discovered early on that self-managed programs are not ideal for all caregivers, and that many required ongoing support. Caregivers who were confident about controlling budgets could receive funds in increments. Some caregivers who opted to manage their own budgets reported that lump-sum payments were not manageable, either because they made it difficult to track spending, or because changing circumstances led them to reconsider how they wanted to spend the funds. Strategies were tailored to meet caregivers’ unique needs such as the delivery of smaller cheques throughout the year, or small dollar amounts loaded on prepaid cards or gift cards. In some instances such as installation of ramps or stair lifts, lump sums were provided. Receipts were requested where appropriate. We anticipated that the collection and return of receipts for smaller purchases could add unintended burden and cause stress to some caregivers. We attempted to reduce burden by providing some caregivers with pre-loaded gift cards. In other instances, the coordinator contacted vendors and suppliers directly to ensure that services and items had been delivered as specified in care plans.

Activating the CFSP Package

Completed care plans and the appropriate consent forms were sent to the Alzheimer Society of Toronto for review and approval; approval generally took place within one to three days after an application was received. The project coordinator reviewed applications for completeness and sought approval from the appropriate signatory. Both care coordinator and caregiver were informed of the outcome via email or phone. Following approval, care coordinators assisted in accessing services and supports on behalf of caregivers, although on occasion, care coordinators relied on the project coordinator to contact vendors or providers to cost-out and access requested supports. Care coordinators also relied on the project office to initiate supports on behalf of caregivers who did not have the capacity to do so for themselves. While reducing caregiver and 26


Follow-up

Care coordinators followed up with caregivers at regular intervals to ensure that negotiated care plans were being followed. In cases where it was clear that the caregiver needed more assistance to meet changing circumstances, care plans were revised accordingly. Changes in access to other formal services also impacted on care plans. For example, during the CFSP’s first year, a home care service adjustment meant that in-home lab tests would no longer be provided. For one caregiver this meant transporting a cared-for older person with dementia who required weekly therapeutic medication monitoring to a commercial lab. The CFSP package was modified in response.


Evaluation Highlights

The evaluation found that the modest budget amounts available through the CFSP catalysed a dynamic process of problemidentification and problem-solving; as a result, caregivers reported that they were better able not only to manage immediate crisis, but to continue to care into the future. The evaluation noted that the CFSP aligns with key policy directions and priorities in Ontario, as it:

a more expedient way and that they felt better supported, despite being concerned that the program might end; and • Reported high levels of satisfaction with the design and delivery of the program (averaging 8.8 on a 10-point scale). For their part, care coordinators:

Caregivers, stakeholders and CFSP staff identified a range of additional benefits. They observed that the CFSP:

• Valued the flexibility and opportunity the CFSP offered for them to engage with caregivers in short- and long-range problem-solving; • Reported consistently high levels of satisfaction with and support for the CFSP as generating a range of benefits including improved crisis avoidance and maintenance of caregiver capacity; • Felt that the CFSP moderated caregiver burden, as caregivers no longer had to manage alone; • Stated that because caregivers felt better supported, they were more likely to continue to provide care; and • Recommended that the CFSP become a standard component of care for all high needs seniors (Williams et al. 2013).

• Expands the “unit of care” to include the informal caregiver and care recipient; • Recasts the relationship between formal and informal care, with informal caregivers becoming active participants in formal care decision-making; • Sustains informal caregiving over longer terms and establishes community-based capacity by equipping caregivers and care coordinators to mitigate short-term crisis; • Encourages caregivers to guide the conversation and select combinations of services that support them in building capacity and gaining a sense of mastery and control over their situation (Williams et al., 2013); and • Utilizes client-centred principles, whereby the money follows the client. Caregivers received services as they specified, at the time and place they desired; if a vendor or service were changed, funds would be reallocated to the new provider.

An additional point is worth elaborating. Although it was initially assumed that caregiver stress would decline as a result of the CFSP, no measurable change was observed. Care coordinators suggested that this reflected the fact that caregiver stress and burden derive from multiple sources. In addition to the personal capacity and resources of the caregiver (e.g., health status, education and income), caregiver burden and stress emerged as a function of the changing needs of the cared-for person, as well as access to needed formal care services. Thus, even as the CFSP added supports for caregivers, many caregivers whose own health had worsened were called upon to provide higher levels of care for older persons who continued to experience decline. At the same time, ongoing service “adjustments” beyond the reach of the CFSP (e.g., cuts in home care hours) reduced access to needed formal care. On balance, therefore, case managers felt that even maintaining levels of caregiver stress at a constant level was itself a good outcome.

There was strong support for the CFSP among caregivers who:

Key Lessons Learned

• Formally recognizes the critical role of caregivers—who provide the bulk of the care for care recipients—as “clients” in their own right • Calls attention to at-risk informal caregivers and highneeds older persons who are, or who could become, high healthcare utilizers (Walker 2011); and • Strengthens linkages between home care and community support providers thus contributing to greater system integration (Williams et al., 2013).

• Reported increased capacity to cope due to enhanced counselling and better knowledge of where to access help; • Appreciated budget management and coordination of services by the project office which reduced their need to perform bookkeeping tasks; • Said that the program afforded access to needed services in

The CFSP offers a number of important insights for future caregiver support initiatives and for policies supporting caregivers. Three are offered below. First, Include Caregivers in the Unit of Care

Given the crucial role of informal caregivers in home and community, particularly for persons with high needs, informal caregivers should formally be recognized as part of the unit


Caring for Caregivers of High-Needs Older Persons Natalie Warrick et al.

of care. Here, Ontario could follow the lead of Manitoba’s Caregiver Recognition Act (2011), which validates the caregiver role, and potentially gives them access to a wider range of formal services and supports. Second, Provide Flexible Budgets and Individualized Decision Support

Stakeholders reported that while flexible funding encouraged person-centred solutions, it posed challenges for overburdened caregivers who did not have the time or resources to carefully assess their needs and then access needed supports and services on their own. Supported self-management was seen as a better way, as caregivers could draw on the experience and skills of professional care coordinators who in turn had the flexibility to consider not only what their organization could provide, but how best to serve the needs of caregivers and cared-for persons over short- and longer-terms. Stakeholders endorsed the idea that supported self-management should become a standard practice for all “at-risk” caregivers. Third, Engage Earlier

As currently configured, the CFSP is often initiated at the point of crisis, after burden and stress have already pushed caregivers to the breaking point. Stakeholders saw the desirability of putting caregiver supports in place earlier, possibly at the point when cared-for persons are assessed as having multiple chronic needs. While caregiver initiatives may not, in and of themselves, guarantee that older persons will never require hospital or residential LTC, caregivers and stakeholders thought that they facilitated better planning and crisis avoidance, thus reducing the likelihood of unplanned “default” to these more costly care options. But perhaps most importantly, by engaging earlier, caregivers and cared-for older persons could experience increased peace of mind and greater control over life decisions. Conclusions

While there is significant agreement in the literature around the important role of informal caregivers and the economic costs they incur in supporting frail seniors (Change-Ability 2009), there is less consistency surrounding how best to design policies to support informal caregivers. Caregivers are heterogeneous and require interventions tailored to their needs and the needs of care recipients. Stakeholders observed that caregiver stress emanates from the personal characteristics and capacity of the caregiver (e.g., education, income, language and culture), from the needs of cared-for persons and from the challenges inherent in accessing fragmented and stretched formal systems of care. The rising care needs of older persons, complicated by changes to home care providers, decreased home care hours and job loss, led several

28


caregivers to report persistent levels of stress despite the CFSP. However, they also reported that their participation in the CFSP made it possible for them to face these challenges and continue caregiving. Care coordinators and caregivers reported that at least in some instances, LTC placement and visits to the ER had been avoided or deferred because caregivers knew, as a result of the CFSP, that they could get the help they needed, when they needed it. This is an important point, as even when they know exactly what they need, caregivers will continue to face many such challenges, particularly when multiple services from multiple providers are required (Warrick and Hebert 2012). The most critical aspect of the CFSP was the ongoing conversation between the care coordinators and caregivers catalysed by modest budget amounts. This conversation helped to identify the caregivers’ priorities for support, and empowered them to develop responsive and flexible care plans to address these needs. Ultimately the CFSP improved the caregivers’ own ability to problem-solve, which in turn helped to moderate their stress and build capacity to continue caregiving. The CFSP has also demonstrated successful application and proof-of-concept of a community service agency as the lead and a CCAC as a key partner. An expansion of this project across Ontario could be achieved using Health Links (MOHLTC 2013). References

Change-Ability Inc. 2009. “Caring about Caregivers. Policy Implications of Long-Range Scenario Planning.” Report to the MOHLTC. Retrieved February 9, 2014. . Conference Board of Canada. 2012. “Home and Community Care in Canada: An Economic Footprint.” Retrieved February 9, 2014. . Cousins, R., A.D. Davies, C.J. Turnbull and J.R. Playfer. 2002. “Assessing Caregiving Distress: A Conceptual Analysis and a Brief Scale.” British Journal of Clinical Psychology 41(4): 387–403. Medical Research Council. 2008. “Developing and Evaluating Complex Interventions: New Guidance.” Retrieved June 2011. . Ministry of Health and Long-Term Care. 2012. “Ontario’s Action Plan for Health Care Better Patient Care through Better Value from our Health Care Dollars.” Retrieved February 9, 2014. . Ministry of Health and Long-Term Care. 2013. “About Health Links.” Retrieved March 2013. . Mittelman, M.S., S.H. Ferris, E. Shulman, G. Steinberg, A. Ambinder, J.A. Mackell and J. Cohen. 1995. “A Comprehensive Support Program: Effect on Depression in Spouse-Caregivers of AD Patients.” The Gerontologist 35(6): 792–802. Mittelman, M.S., D.L. Roth, O.J. Clay and W.E. Haley. 2006. “Improving Caregiver Well-Being Delays Nursing Home Placement of Patients with Alzheimer Disease.” Neurology 67(9): 1592–99.


Keefe, J.M. 2011. Supporting Caregivers and Caregiving in an Aging Canada. IRPP Study 23. Montreal: Institute for Research on Public Policy. Peckham, A., A.P. Williams and S. Neysmith. 2014. “Balancing Formal and Informal Care for Older Persons: How Case Managers Respond.” Canadian Journal on Aging, 33: 123–36. Pinquart, M. and S. Sorensen, S. 2006. “Gender Differences in Caregiver Stressors, Social Resources, and Health: An updated Meta-Analysis.” Journals of Gerontology: Psychological and Social Sciences 61B (1): P33–45. Sinha, S. 2012. Living Longer, Living Well: Recommendations to Inform a Seniors Strategy for Ontario. Report submitted to the Minister of Health and Long-Term Care. Walker, D. 2011. “Caring for our Aging Population and Addressing Alternate Level of Care.” Report submitted to the Minister of Health and Long-Term Care. Retrieved February 9, 2014. . Warrick, N. and F. Hebert. (2012). “Caregiver Framework for Seniors Demonstration Project: Interim Evaluation.” Retrieved February 9, 2014. . Williams, A.P., A. Peckham, D. Rudoler and J. Watkins. (2012). “Caregiver Support Initiative: Formative Evaluation Preliminary Results.” Report to Alzheimer Society of Toronto. Retrieved February 9, 2014. . Williams, A.P., A. Peckham, D. Rudoler, T. Tam and J. Watkins. (2013). “Caregiver Support Project: Formative Evaluation.” Report to Alzheimer Society of Toronto. Retrieved February 9, 2014.

About the Authors

Natalie Warrick, MSc, is a PhD student and Research Associate at the Institute of Health Policy, Management and Evaluation, University of Toronto. Her focus is on the delivery of home and community services to informal care providers of persons with dementia. She can be reached by email at: Natalie.warrick@mail. utoronto.ca Allie Peckham, MSW, is a PhD candidate and Research Associate, Institute of Health Policy, Management and Evaluation, University of Toronto. Her work focuses on the intersection of formal and informal care in the home and community care context. Jillian Watkins is a PhD candidate and Research Associate, Institute of Health Policy, Management and Evaluation, University of Toronto. She studies the social exclusion/inclusion of LGBT seniors in home and community care. Marija Padjen, MSW, is Chief Program Officer, Alzheimer Society of Toronto. She is responsible for developing and facilitating a broad range of educational and support programs to guide people through the different stages of Alzheimer’s disease, including complex life-altering decisions. A. Paul Williams, PhD, is Professor of Health Policy, Institute of Health Policy, Management and Evaluation, University of Toronto. His research highlights options for integrating community-based health and social care for older persons and children with multiple chronic needs.
