Clinically significant changes in burden and depression among dementia caregivers following nursing home admission

Over 50 million individuals provide unpaid care to adults who are disabled or ill http://​www.​caregiver.​org. The prominence of informal care in the U.S. has led to a large number of studies describing family caregivers [1], examining stress in family caregiving [2, 3], and evaluating the effectiveness of psychosocial interventions and respite services for caregiving families [4‐6]. As chronic illnesses such as Alzheimer's disease or other dementias progress, critical health transitions (diagnosis, institutionalization, bereavement) may exacerbate negative health outcomes for persons with dementia or their family caregivers. Nursing home admission (NHA) in particular is a transition that is considered a key clinical marker of dementia progression [7].

Although extensive research exists on informal long-term care, little work has examined the clinical significance of transitions or other phenomena due to a lack of established clinical cut-points on key caregiving measures [8]. This has made it difficult to interpret results or effects of interventions for dementia caregivers. The high prevalence of dementia among nursing home residents (69% of all nursing home residents suffer from some form of cognitive impairment) [9] may place ongoing care demands onto family members. Several studies have noted that families continue to provide various types of informal (that is, unpaid) assistance to relatives in nursing homes (NHs). Such assistance ranges from visits, to care provision, to staff interaction [10‐12]. For these reasons, it would be valuable to determine whether NHA has a clinically significant impact on caregiving outcomes and to identify those variables that predict clinically significant levels of burden and depression among caregivers after NHA. Using a large, multi-regional, and longitudinal data set of dementia family caregivers, the present study sought to: 1) determine whether clinically significant reports of burden or depressive symptoms change within 12 months of NHA, and 2) identify factors prior to NHA that predict clinically persistent burden and depression within the first year following institutionalization. These insights will serve to guide the development of effective intervention strategies that offer psychosocial support to dementia caregivers grappling with the potential challenges of NHA.

The proportion of caregivers who reported clinically significant levels of burden prior to placement was dramatically reduced 6 and 12 months following NHA. A similar change occurred in clinically significant depression following institutionalization, although the reduction was less pronounced. Nursing homes assume many of the challenging care tasks that informal caregivers had provided. Specifically, NHs play a strong "substitution" role as formal care providers (staff) assume the care responsibilities formerly provided by informal caregivers (family members) [48, 49]. This may lead to considerable emotional and psychological relief for family members.

This is not to say that some family caregivers do not experience distress or challenges during NHA. While several sociodemographic and contextual characteristics predicted persistent, clinically significant burden across the 6- and 12-month post-placement panels, kin relationship emerged as a potent influence. Female caregivers, and wives in particular, appeared far more likely to experience persistent burden following institutionalization. Female caregivers generally are more involved in day-to-day hands-on care provision and may also have a more difficult time relinquishing this role to 24-hour NH care staff; for example, wives tend to indicate more emotional investment in their caregiving roles when compared to other caregivers and also provide more direct care than husbands at pre-placement. This may continue after institutionalization (for example, supervising the care tasks performed by NH staff, playing an advocacy role for the institutionalized husband to ensure proper care is delivered in the NH) [2, 12, 31, 32]. Therefore, stress may not abate with NHA for female caregivers who are heavily engaged in the emotional and direct, day-to-day care challenges associated with assisting a relative with dementia. Caregivers who indicated more frequent behavior problems in their relatives, provided more hands-on care, reported unmet needs pertaining to functional dependence of care recipients, and struggled with health or functional impairments of their own were also more likely to experience burden following NH placement. It may be that care recipients with more severe functional or behavioral impairments are more difficult for NH staff to manage successfully, so much so that their families feel compelled to remain involved in the care of institutionalized relatives and to interact regularly with NH staff to ensure proper care is delivered [10, 11]. Such involvement is likely difficult to maintain when caregivers suffer from their own health impairments, thus leading to elevated burden after NHA.

Husbands, on the other hand, were particularly susceptible to post-placement depression across the 6- and 12-month panels. Husbands may have difficulty in adapting to and confronting the emotional loss of a partner and disruption to the role of husband in the context of institutional placement. Moreover, husbands may be less likely to have a reservoir of social support to rely on during NHA. These factors could lead to increased depressive symptomatology. We also found that caregivers with greater subjective health impairment and pre-placement burden were more likely to experience persistent depression across post-placement panels, which adds to the evidence suggesting that caregivers with physical or emotional challenges during at-home care may have continued psychological difficulty with the NH transition. It is possible that caregivers with emotional distress and health impairments may have felt increased guilt when they had to relinquish at-home care responsibilities due to these issues.

We have noted in our prior research that the provision of intensive, individualized consultation can help mitigate reports of burden or depressive symptoms among dementia caregivers [24]. It appears that the expanded case management model of MADDE did not exert a significant influence on caregivers' depressive symptomatology or burden during the NH transition. Consideration of the descriptive findings here as well as our prior clinical work reiterates what is currently best-practice in dementia caregiving intervention: multi-component psychosocial interventions that combine individualized consultation with family sessions and ongoing support often exert the greatest benefits in improving dementia caregiver outcomes, delaying NHA, or enhancing dementia caregivers' experiences across key transition points [6, 50]. Alternatively, case management/referral models such as the MADDE approach tend to yield less consistent effects on such outcomes.

Although this analysis had at its disposal a large, multi-regional data set, there are several limitations that are important to consider. One is that there is no specific information about the type of care received in the NH by the care recipient, extent of family care provided to cognitively impaired care recipients following institutionalization, or post-placement measures of care recipients' dementia severity or functional status. In addition, MADDE data were collected in the early 1990 s. Since then a number of developments have occurred in long-term care, such as market availability and the emergence of assisted living, which may influence families' placement decisions. Although the MADDE data set is large, it did not rely on probability sampling techniques. Since to our knowledge no "gold standard" clinical rating of burden currently exists [51], we had to rely on the GDS to establish the clinically significant cut-point for burden. The sample size is also largely Caucasian. While this is expected due to lower NH placement rates frequently reported by African-American and Latino caregivers [52], such disparity may still influence generalizability. As noted by Jacobson and colleagues [53], the construct of clinical significance is best operationalized as "recovered," "improved but not recovered," and "still dysfunctional." In order to improve clarity of our interpretation, we limited the outcome to those who "recovered" and those who were "still dysfunctional" per the Jacobson classification. Inclusion of the third category (improved but not recovered) may have offered a fuller picture as to how each of these three potential outcomes occurred across the NH transition.

Several site effects were also apparent [[31], p. 394]. A limitation of MADDE was the lack of regional data to explain why site variations occurred in outcomes such as burden or depressive symptoms. Issues ranging from culture, to varying methods of MADDE implementation, to staffing ratios may have accounted for site-level variation in key variables. Historical events (Hurricane Andrew occurred in Florida in 1992) may have also influenced dementia caregivers' reports of distress during MADDE. Overall, the variations across site suggest that future multi-regional caregiving studies (descriptive or intervention-focused) must incorporate site data to explain the manifestation of key outcomes.

As the nature of family involvement may shift with residential care placement, it is possible that measures of caregiver stress require modification to better capture dimensions pertinent to the NH environment following institutionalization. As we have emphasized in prior research [24, 31] future measures should approach NHA as a transitional event with a focus on pre-admission and post-placement factors. Key pre-admission variables could include how the decision to institutionalize came about, how helpful the NH was in facilitating the move, difficulty in finding an appropriate facility, and overall satisfaction with the institutionalization experience. During post-placement, greater attention to family caregivers' experiences with NHs such as family-staff interactions, types of family involvement, perceptions of collaboration with NH staff, and ratings of the philosophy of care (for example, family-centered emphasis) may improve measurement of the NH transition's influence on dementia caregivers.

The findings of these analyses have several implications for future research and practice. Perhaps the most striking result is the apparent effect of NHA on clinical reports of burden and depressive symptoms following institutionalization. Our results emphasize that placement itself may provide relief and reductions in negative outcomes for dementia caregivers, particularly burden (in which we found a more considerable decrease than in depressive symptoms). Is it possible to reconcile our results with the ongoing focus of federal, state, and local support services to prevent NHA and save taxpayer-financed healthcare costs (for example, Medicaid in the U.S.), since this study shows that for many dementia caregivers placement may actually exert significant, clinical benefits? Perhaps the emphasis on preventing institutionalization is less appropriate than identifying the right time to make the placement decision or determining what types of support are optimal to reduce burden and depression during the period the person is cared for at home as well as during the NH transition [54]. More widespread implementation of effective psychosocial interventions to reduce caregiver burden and depression prior to the transition to NH placement can ameliorate the symptoms of burden and depression and increase the likelihood that a placement event is not premature, but instead occurs at an appropriate time. Nursing home admission should be viewed as a key transition faced in the course of dementia as opposed to a clinical endpoint.

While NHA may help to reduce overall burden and depressive symptoms in most caregivers, some may experience continued emotional and psychological distress well after institutionalization. The results of this study help to construct a profile of caregivers most at-risk for clinically high, persistent negative outcomes in the months after NHA. Wives, daughters, caregivers who have challenges meeting the needs of care recipients, and caregivers who have difficulty with their own health needs appear particularly susceptible to clinically persistent burden in the months immediately following NHA. Husbands and caregivers who experience health impairments and emotional stressors of their own prior to institutionalization appear most likely to suffer from clinically significant depression throughout the NH transition. Our findings can serve as an initial step in developing a screening process to identify families at-risk for burden or depression immediately prior and subsequent to institutionalization. Such families might benefit from psychosocial interventions (such as those provided by NH social workers or family nurse practitioners) during NHA to ease the transition and alleviate adverse outcomes following institutionalization. For example, using a transition "coach" during the pre-admission phase, the entry process, and in the months following admission could provide education regarding the NH environment and care policies, management of emotions and stress that may occur during the entry process (for example, guilt or grief), validation of families' decisions, and advocacy in facilitating interactions between NH care staff and administration. Such an approach may help families navigate the NH transition, and the development and testing of this or similar interventions could serve as a focus for future evaluation.