Preparation for Future Care: The Role of Family Caregivers
Preparation for future care (PFC) is defined as the attitudes, thoughts, and actions that caregiving families and older adults undertake to develop plans for when the older adults are no longer able to independently carry out activities of daily living. They include the location and manner in which the older adult hopes to receive assistance and care, who will and can provide this care, and under what circumstances the care would be needed. PFC encompasses four measureable steps/dimensions (Sörensen et al. 2017): (1) an initial awareness of potential future needs, (2) gathering information about needs and resources that might address those needs, (3) making decisions about preferences, and (4) taking concrete actions to ensure those preferences are accessible when needed. A fifth dimension of PFC is (5) the active avoidance of future care planning. High avoidance stifles active consideration of future needs.
For caregivers and potential caregivers of older adults, preparation for future care (PFC) involves becoming aware of the impending care needs (see “Care Needs; Personal Care”) of the older adult and the family, helping them gather information about those needs and the resources available to meet them, advising or participating in weighing options and decision-making, and helping the older individual implement care preferences, when possible. PFC is both important for avoiding unexpected, rushed care decisions and beneficial for older adults’ and their families’ peace of mind. There are a number of barriers to PFC that prevent families from engaging in PFC, including the older adult’s personality characteristics (see “Personality in Later Life”) and cognitive deficits (see “Age-Related Cognitive Impairment”), negative beliefs about planning, family dynamics and poor communication, discomfort with envisioning parental dependency, and caregiver stress, depression, and cognitive deficits. Current models of guiding families to engage in future planning are based on improving problem-solving abilities and clarifying families’ values and communication.
Theoretical Roots and Key Research Findings
PFC is a special case of proactive coping (Ouwehand et al. 2007) and anticipatory coping (Aspinwall and Taylor 1997). It is consistent with preventive and corrective proactivity (Kahana et al. 2012) and encompasses older adults’ and their caregivers’ attempts at selecting environments and controlling their quality of life before they become frail or need assistance. The role of actual or potential family caregivers in this context can include initiating discussions about the future, gathering medical and resource information, exploring options, and helping the older adult navigate the long-term care system.
The four steps of PFC – becoming aware of needs, gathering information, deciding on care preferences, and making concrete plans – can be enacted consecutively, but some older adults may skip a step, for example, if they accept an offer of life-long assistance from an informal caregiver without further consideration of options (see “Formal/Informal Care”; Sörensen and Pinquart 2000a). Furthermore, plan revision over time is a likely scenario if initial concrete activities result in less-than desired outcomes (see “Caregiver Outcomes”), resulting in multiple feedback loops. When circumstances change from the time of the original plan, caregivers may still be faced with unexpected care decisions and activities (Sörensen and Pinquart 2000b). Caregivers to older adults who are avoidant are most likely to have their concerns and attempts to elicit care preferences dismissed (see “Awareness of Age-Related Change”).
Is There a Need to Prepare for Care?
Forecasts for family members of aging adults in the USA and Canada indicate that about three quarters of young and middle-aged adults can expect to have an older adult depend on them for hands-on assistance or guidance in obtaining assistance; the majority of women now in their 20s and 30s can anticipate providing care for 6 years in later life. Among those currently aged 70 and older, men and women can expect to provide care to a parent or spouse at equal rates (Freedman, as cited in Committee on Family Caregiving for Older Adults 2016). The research on family decision-making about care suggests that they are likely to benefit from PFC (Deimling et al. 2001), as many can expect caregiving, but may not be well-prepared (Schumacher et al. 2007): A large proportion of caregivers report unmet needs for information, discussions of values and needs, and decision support (Garvelink et al. 2016), and referrals to caregiver support resources and education (Black et al. 2013).
Between 14% and 26.1% of caregivers in the National Long Term Care Survey had never used home- and community-based care services, such as support groups, home-delivered meals, or transportation, despite indicating their older adults needed them (Casado et al. 2011). Some of this lack of service use is due to lack of awareness of existing services, lack of appreciation for their benefits, and the need to clarify preferences and acceptable care options, and to arrange services in advance (e.g., Brodaty et al. 2005). However, despite the known challenges of family caregivers of older adults, PFC has been studied primarily in the context of the older individual, with little attention to the contribution of potential and actual family caregivers in the process or the content of planning. This is a current research gap.
Nevertheless, the benefits of PFC to older adults also affect caregivers. For example, PFC and active engagement in decision-making about care are related to greater subjective well-being after residential transitions (Ball et al. 2005) and fewer subsequent depression symptoms in community-dwelling seniors (Sörensen et al. 2012) (see also “Residential Happiness”). Caregivers value these benefits because older adults’ negative mood is often associated with caregiver guilt and distress (Feast et al. 2017).
The Role of Family Caregivers in PFC
Actual or anticipated family caregivers have a critical opportunity to serve as advisors and care partners in the decision-making process of older adults, especially in the decade approaching a care transition. A caregiver may find that care receivers, as they become frailer (see “Frailty and Social Vulnerability”), rely increasingly upon him or her for decision-making through delegation of choices, deferral, or avoidance (Finucane et al. 2002). But caregivers may also face resistance to helping with planning due to real or perceived restrictions of the older adults’ autonomy and when older adults see only the unpleasant aspects of considering potential future illness and disability (Carrese et al. 2002). Because of limited decision-making capacity in older adults with dementia (see “Dementia”), carrying out shared decision-making is a process “fraught with complex family, ethical, and legal dilemmas” (Miller et al. 2016).
One of the most common dilemmas for adult child caregivers is balancing the preferences of their elder parents (which are often “I want to stay in my home”; see “Aging in Place and Quality of Life, Aging in Place: Maintaining Quality of Life for Older Persons at Home”) with their gradually increasing needs for more supervision, medical attention, or daily structure. PFC is important in this context, because the choices made and actions taken (or not taken) by older adults and their families before the onset of illness directly affect family caregivers’ responsibilities. For example, savings for future care allow for more freedom in choosing care arrangements and thus more peace of mind for caregivers. In addition, miscommunication or disagreement about care goals and preferences are a common source of tension and conflict in caregiving families, which can contribute significantly to caregiver distress (Suitor et al. 2017) and lower quality of life (Shelton et al. 2017). Consistent with this, low satisfaction with the care decisions explains a substantial amount of caregiver distress (Deimling et al. 2001). These findings suggest that these ill effects could be partially avoided through precaregiving planning discussions.
Of course it is impossible to plan for all circumstances. For precaregivers, an older relative being discharged from the hospital means suddenly having to implement a treatment plan in which the availability (see “Kin Availability”) of help from relatives is simply assumed (by the hospital), without regard to their ability, knowledge, or training in performing caregiving tasks (Freedman and Spillman 2014). Caregivers who are forced to engage in emergency decision-making, without the senior’s full input, often experience undue burden and increased risk of choosing inappropriate care arrangements. However, having engaged in joint PFC may mean that helpers can be identified earlier, can be better prepared for tasks they face, and are thus protected from adverse outcomes in high-demand situations (Schumacher et al. 2007).
However, even if older adults and their caregivers can predict potential future needs – e.g., requiring a walker or a dementia care facility – affective forecasting, or being able to predict how situations will make one feel, is often poor, thwarting effective planning. That is, because closer future events are easier to distinguish than more distant ones, older adults’ current health may serve as a reference point for expectations of future well-being, but may change as they become less healthy (Winter et al. 2009). Thus, an older man may delay moving to a senior facility because he predicts that life there would be unbearable. Staying in his own home with in-home care may be perceived as ideal while he is still mobile, but with decreasing mobility, it may be linked to increased loneliness and isolation. Implications for caregivers are that sensible adjustments are difficult to make as a result of inaccurate estimations of what they might feel like to the elder.
Barriers to Preparation
Despite evidence for PFC’s benefits, a surprisingly small number of families engage in care planning behaviors, including advance directives, documenting future treatment and end-of-life preferences. Rates of older adults who make plans for future care are about 15% (Sörensen and Pinquart 2000c; Brown 2009). Because 60% of adults aged 50–65 believe they are very or somewhat unlikely to need long-term care in the future (Henning-Smith and Shippee 2015), caregivers are often hampered in planning for the older adults in their family. This is especially true in hospital discharge planning and transitional care where caregivers often lack access to and understanding of elders’ treatment plans (Bauer et al. 2009). Even among caregivers of older individuals with serious mental illness, only 14% report definite plans (Corsentino et al. 2008). In a sample of first-degree relatives of older adults with Alzheimer’s disease (mostly caregivers), the mean values for planning fell below the scale midpoints for gathering information, decision-making, and concrete planning (Mak and Sörensen 2011).
Barriers to care planning include trait-like characteristics, such as high trait hope or excessive optimism (Sörensen et al. 2014; Southerland et al. 2016) and low openness, which is associated with less awareness of future care needs and gathering information (Sörensen et al. 2008). Previous experience of uncontrollable life events (wars, political upheaval, disasters) may constrain planning because families do not perceive the benefits of planning (Sörensen and Pinquart 2000a, b). Family conflict may also constitute a barrier to caregivers’ PFC (Hash and Netting 2007), as does insecure attachment between the caregiver and the older adult (Sörensen et al. 2002). Many adult child caregivers delay family conversations about care because they see them as premature as long as the parents’ current health status is good (Bromley and Blieszner 1997). Aging parents’ belief that their offspring will somehow “know” their wishes is a further barrier (Pecchioni and Nussbaum 2001). Adult children may also be nervous about potential familial conflict over care responsibilities or uncomfortable with taking on a more directive role with their parent (Pecchioni and Nussbaum 2001). Finally, family caregivers, whose stress and depression may interfere with their ability to concentrate (Corrêa et al. 2015; Vitaliano et al. 2016), may experience cognitive deficits that prevent effective future planning. Nevertheless, in studies of caregiver-identified needs, “future planning” was the third most reported need for Parkinson’s caregivers (Lageman et al. 2015) and a key concern of dementia caregivers (e.g., Smith et al. 1991).
Planning for care is also more difficult in changing service environments. Choosing a senior facility or home health-care agency only to find out that their service model, quality (see “Quality of Care”), or personnel has changed drastically can be frustrating for both caregivers and older adults (Sörensen and Pinquart 2000b). Thus, caregivers must maintain flexibility and the ability to explain such changes to the older adults in their care, focusing on maximizing joint care goals (see “Goal Setting; Intergenerational Relations: Incentives to Provide Care to Older Adults; Formal/Informal Care”).
In addition, structural factors, such as the unavailability of family members (see “Kin Availability”), and limited financial means, cultural gender-linked patterning of elder care, and levels of acculturation in different ethnic groups may also constrain planning (see “Caregiving and Ethnicity, Fictive Kin”). In non-Western and/or nonindustrialized societies where elders reside in intergenerational compounds and eldercare is routinely provided within the extended family system, the future care preparation described here is likely to be either unnecessary or enacted differently. However, multiple authors have pointed out that the idealized notion that ethnic minority communities in North America “take care of their own” is not or no longer the norm (e.g., Koehn 2009). Nevertheless, assumptions that older adults and caregivers in these communities do not need to plan persist, placing the caregivers from these communities at increased risk for stress from lack of supports and services.
Future Directions of Research
In their recommendations for caregivers for older adults with age-associated cognitive changes, Bailey and Gordon (2016) propose preparation and planning as a way for families to engage in discussions about caregiving, thus reducing forced and inappropriate caregiving situations. However, older adults or potential caregivers rarely pursue PFC actively, as it involves envisioning unpleasant scenarios of future dependence and requires cognitive skills and access to resources that are not available or known to all. Future research is needed on the effect of older adults’ future care planning on caregivers. Given the limited research on planning for older family members at the caregiver level, additional research is needed how family members are currently contributing to aging baby boomers’ PFC (see “Baby Boom/Baby Bust”), and what factors could enhance planning activities for family groups. Recent work with older adults who have vision loss suggests that increasing PFC is possible if it is combined with teaching more general problem-solving strategies (Sörensen et al. 2015). This model could be adapted to encourage greater dialogue and family discussion of future care needs, allowing family members to overcome the aversive aspects of imagining their parent or spouse struggling with future impairment. Instead it can open the door to envisioning effective “possible selves”(see “Possible Selves Theory”) coping well with an unavoidable affliction and learning multiple strategies to do so. Another future care planning model focuses on early dementia caregiving dyads and helps families clarify both older adults’ and caregivers’ values and preferences in order to give both a voice in care decisions. The aim of the program is to prevent caregiving crises by “(1) actively engaging the person with dementia in developing a balanced plan of future care with his/her caregiver, (2) increasing use of available services, (3) enhancing dyadic relationship functioning, and (4) improving well-being” (Whitlatch et al. 2017, p. 1).
As more baby boomers age, there will be fewer individuals to assist very old and frail individuals. While adequate financial and social resources, and more community-based care options, are facilitators planning, engaging in PFC may also facilitate access to these resources for caregiving families. In order to help both older adults and family caregivers successfully navigate difficult late-life transitions, the introduction of more systematic future planning guidance programs could change the shape of informal caregiving to a more collaborative experience. Such programs would allow families to become aware of the potential changes that lie ahead, know what realistic options they have for coping with them, and begin identifying and communicating their preferences to each other.
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