Family Interventions

When effective, health and social care systems may help caregivers keep a relative with dementia at home. One powerful way of doing this is to work with the family. The term “caregiver” will be used here in the context of informal caregiving, mostly provided within the family. Family work in BPSD may be focused on caregivers or broadly (“systemically”) address family structure or dynamics. We will not go into detail, and readers are directed to primary references in each field. This section aims to help clinicians consider a referral to other professionals with family work experience. In cases in which this is not necessary or in poorly resourced settings, simple “family-sensitive” approaches are helpful as powerful ways of working directly with these families.

Caregiver-Focused Interventions

The rationale for these interventions comes from acknowledging that caregivers’ needs, including those related to information and skills and to psychological distress, are often unmet. In addition, caregivers are one of the most readily available resources when facing BPSD.

Classifications differ. For instance, Donaldson and colleagues systematized three types of intervention: targeting symptoms of dementia (drugs or behavioral approaches), reducing caregivers’ exposure (respite care or caregiver support), and modulating caregivers’ responses to symptoms (individual or family therapy) [1]. Pinquart and Sorensen considered: general support, counseling/case management, cognitive-behavioral therapy (CBT), and psychoeducational, multicomponent, and miscellaneous interventions, along with care-receiver training [2]. Caregiver interventions require varying degrees of specialized training and multidisciplinary collaboration. In short, we will mainly consider supportive or psychoeducational approaches and new-generation (including technology-assisted) and multicomponent interventions. If they involve the patient, these interventions will not be strictly caregiver oriented, although their major components usually target caregiving issues. Mutual peer support as provided by family organizations (e.g., Alzheimer’s Association) is of invaluable help, but we will be focusing on interventions by professionals (please refer to the section “Practical Approaches: Reflections for Clinicians”).

Broadly speaking, supportive interventions may include individual counseling and supportive, but not usually in-depth, psychotherapy. Family counseling may consist of 1 to 4 carefully planned sessions to build realistic consensus around caregiving issues [3]. Groups for relatives generally include strong therapist/peer-related support components, allowing for emotional ventilation and normalizing negative feelings and thoughts. However, some relatives do not like being in groups and these should not be seen as a panacea. Respite care, typically provided for 30 days or less in day centers, institutions, etc., may also be included here, as key formal support for alleviating the burden on caregivers.

Psychoeducation is another broad, sometimes misused, term that includes all kinds of family work aimed at improving health literacy in dementia (i.e., knowledge and skills). Educational and CBT approaches - e.g., communication and problem-solving skills training - have been widely adopted here. Interventions may be delivered in individual or group formats, at home or in service settings. They generally follow a structured, manualized program addressing topics like: symptoms and diagnosis, causes, drug and psychosocial treatments, prognosis, dealing with BPSD, institutionalization, death and grief, legal issues (e.g., rights of persons with dementia, legal competence), social and financial benefits, and caregiver selfmanagement issues including relaxation techniques. Examples of specific targets may be passive coping strategies [4, 5], driving cessation issues [6], or how to cope with challenging toileting behaviors or incontinence, when patients and families alike experience humiliation, distress, and financial and iatrogenic consequences, and caregiver strategies may be built around preserving dignity and improving the containment of excreta [7].

The main objective of CBT is to change behaviors, emotions, or thoughts. There is evidence that individual behavioral sessions (six or more) directed at caregivers (or combined with patients) improve caregivers’ psychological health [8]. Techniques may focus on structured problem-solving [9]. In some countries, behavioral and case management interventions are currently delivered by occupational therapists and psychogeriatric nurses, providing environmental modifications at home [8]. In other national or local realities, psychologists are primarily responsible for these interventions. Wherever resources are scarce, psychoeducational and behavioral interventions tend to be hard to access or altogether unavailable.

The interested reader can refer to seminal work led by Gallagher-Thompson [10, 11], Mittelman [12, 13], or Brodaty [14, 15], among others. In the UK, manual- based coping strategy interventions like START (STrAtegies for RelaTives) are being influential by showing that cost-effective psychological interventions reduce clinically significant anxiety and depression in caregivers, improving quality of life [16]. Changes in coping style are expected to be important mediators of the effectiveness of these interventions, as they can be linked to increments in emotional support and acceptance-based and positive coping [17], but more research is needed to clarify the actual “key ingredients”: paradoxically, it was found that dysfunctional coping may increase when caregivers’ depressive symptoms improve [17]. In the SHIELD (Support at Home: Interventions to Enhance Life in Dementia) study

[18], caregivers were asked how confident they were dealing with BPSD. Negative outcomes, such as depression, were associated with reduced self-efficacy - the belief that one can perform capably in a given situation [18]. There have also been effectiveness studies in southern European countries [19, 20], and simple, feasible community approaches have been implemented in the developing world [21]. Where formal support from services is less available, the impact tends to be greater than in high-income countries. Some interventions may focus on the BPSD: for instance, the 10/66 Dementia Research Group caregiver intervention proposes specifically dedicating two out of five individual sessions to them [22].

Main outcomes in most family intervention studies are caregiver related. However, by improving knowledge these interventions may attenuate caregiver reactions to BPSD and eventually reduce patients’ symptoms [23, 24], which may in turn attenuate caregiver reactions even more. There are no reports of interventions focused on expressed emotion (EE), a combination of over-involvement, excessive criticism, and hostility in close relatives [25], as related to BPSD. However, interventions promoting positive care management strategies and reactions to caregiving challenges may become important complements to pharmacologic approaches aimed at slowing the rate of decline in dementia [26].

Recent programs can be called new-generation interventions. Some promising approaches still lack a substantial evidence base, but are worth considering. Acceptance and commitment therapy (ACT) [27], for instance, consists of a CBT approach with less emphasis on cognitive change and more of a focus on “experiential avoidance” (coping by avoiding or escaping from difficult experiences) [27,28]. When faced with BPSD in a relative, some experiences are difficult to change, being either external (e.g., patients’ symptoms) or internal (e.g., caregivers’ emotions or thoughts). Caregivers may be prone to experiential avoidance, which may possibly be nonadaptive: it provides transient relief, but ultimately increases caregiver distress (“boomerang effect”); and it can hamper the fulfillment of valued roles or the performance of activities that are at the core of the caregiver’s life [28]. Marquez- Gonzalez and colleagues provide examples, such as struggling for “perfect” care?giving [28]. ACT aims to increase “psychological flexibility,” encouraging caregivers to accept what cannot be changed and focusing on the pursuit of personal motivations, if partially compromised by caregiving situations. This relates with Baltes’ selection-optimization-compensation model of successful aging or with “finding meaning through caregiving” [29].

New technological approaches have also been developed. This growing field of intervention includes telecare monitoring, interactive voice-response-mediated systems to help the caregiver manage the BPSD, telephone caregiver support, or internet-based caregiver education [30-34]. However, assistive technologies typically require significant caregiver input, and caregivers’ lack of technology awareness may be a barrier to their use [35].

Finally, a consensus has grown that interventions must include multiple components to address the multiple needs that arise at different points in time in dementia caregiving. The REACH (Resources for Enhancing Alzheimer’s Caregiver Health) study is one of the first examples [36]. These programs are commonly seen as multicomponent interventions (e.g., [37-39]). They imply a variable but extensive array of combined interventions for caregivers and patients, including: delivering information; role-playing, problem-solving, and BPSD skills training; stress management and telephone support; and care management, cognitive rehabilitation, counseling, motor stimulation, or even light therapy. Providing support or education alone is less beneficial. Multidisciplinary collaboration ensures that these interventions are individualized, multidimensional, and flexible, involving follow-up and ongoing relationships with families.

Multicomponent training of caregivers by community mental health nurses reduces BPSD [40] , and functional analysis interventions are also useful [39]. Modifying potential triggers improves both BPSD and caregivers’ well-being [41]. According to the available evidence [42], non-pharmacological interventions delivered by family caregivers may reduce the frequency and severity of BPSD (with effect sizes at least equaling those of pharmacotherapy), as well as caregivers’ adverse reactions. Successful interventions typically provide 9-12 individual sessions at home, tailored to the needs of the person with dementia and their caregiver, using multiple components over 3-6 months, with periodic follow-up. Multicomponent programs are the only caregiver interventions known to reduce the risk of institutionalization [8, 42].

Examples of how interventions are increasingly combined and complex in nature come from the involvement of family caregivers in current approaches to reducing BPSD, such as the tailored activities program (TAP) [43]. As placement does not always resolve caregiver distress, some interventions in nursing homes are also indirectly supportive to caregivers, e.g., by helping them alleviate guilt and grief. Van der Ploeg et al. described training caregivers to deliver personalized activities to patients, making visits more satisfying and improving quality of life [44]. Studying the effect on BPSD of one-to-one interaction using Montessori-based activities in nursing home residents, they valued the role of the family, even after institutionalization. Involving the family was fruitful and efficient (saving staff time) [45]. The same applies to family Skype conversations tailored to patients’ needs, as compared to non-personalized interactions [46]. Reports on the Meeting Centers Support Program, developed in the Netherlands, are also encouraging. Combined community-based daycare (including structured caregiver support) has added value - including less BPSD - as compared to regular nursing home daycare, especially for patients cohabiting with their caregivers [47].

In summary, caregiver interventions are effective at increasing knowledge and skills, reducing caregiver distress and BPSD [35]. However, empirical evidence for their utility depends on the specific type of intervention [2, 42, 48, 49]. The evidence base is stronger regarding multicomponent interventions, those with considerable duration, and, as we will emphasize below, those that include (whenever possible) patients themselves and other family members besides the primary caregiver [50].

Clearly, separating caregiver-oriented interventions into different types is to some extent artificial. The so-called common therapeutic factors (therapeutic alliance, support, opportunity for sharing) seem crucial, as in other areas [51]. For instance, the supportive component is pervasive, as in psychoeducational groups or even the new technologies. Overlap is the rule in multicomponent approaches. Overall, focus and depth should be decided in accordance with the family’s needs.

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