Biopsychosocial and systemic approaches to dementia care turn into shallow expressions if we limit ourselves to statements of goodwill and fail to implement them in practice. This is true for neurology, psychiatry, general medicine, psychology, or any other professional practice. Naturally, the level at which practitioners are called on to work with families will vary. It may be less visible, albeit inspired by a multidisciplinary collaborative drive. This chapter is a mere introduction to this perspective.

That drugs help in controlling BPSD, but are no “silver bullet” [68], is widely recognized [50, 69]. Non-pharmacological approaches are usually first line, and those involving family caregivers have the strongest evidence base [69]. In fact, families are a first line of defense [54] and not a negligible resource. Keeping this in mind, Table 16.1 offers some food for thought. These tips are neither exhaustive nor uncontentious, providing a basis for critical reflection. Hopefully, they could help our colleagues in treating José (and Maria and their extended family as well).

Assessment comes first [54], but unfortunately this rule is often forgotten when busy clinicians are urged to help. While a journey can begin without an entirely clear destination, defining some ideas about the first steps minimizes pitfalls and changes of direction. In dementia, relatives have been mostly valued as informants, e.g., describing BPSD, their antecedents, and their consequences, which usually requires more than a brief interview [35]. It should be noted that informant bias may occur, e.g., with strained, depressed caregivers. Overall, working with families implies quiet digging, of the sort Sir William Osler suggested with “listen to the patient, he will tell you the diagnosis.” A golden rule is that family issues must be assessed in detail at some stage, to find out whether they are important in causing or perpetuating the symptoms and whether consequences for caregivers or the family system are significant.

Tact must be exercised in the decision as to what to assess first. Predictors of caregiver burden must be assessed [35, 70]. These may be particular symptoms, like delusions, disruptive behaviors, and communication problems, or characteristics of caregivers or the caregiving relationship. For instance, it was recommended that frontotemporal dementia caregivers should be offered more support than Alzheimer’s disease caregivers [4], although this is not consensual [35]. On the other hand, a symptom that is stressful to one caregiver may not be stressful to others, so one must attend to relatives’ personality and appraisals. An elderly and lonely wife, with a poor premorbid marital relationship, exhibiting immature coping and high levels of criticism toward her husband with dementia, is readily recognizable as at risk: an exploration of depression and anxiety is needed. Protective factors include the existence of a supporting network or the ability to acknowledge positive aspects, such as finding a meaning in caregiving. Some other factors, such as propinquity or information, may be misleading. Caregivers cohabiting with the patient are generally considered to be under most stress. However, e.g., in our clinical case, a daughter living alone with her young child may face additional stressors at home or at work (mention just some conflicting roles) that put her at risk, even though she is “only” a secondary caregiver. Related evidence is still scarce and contradictory [71]. Caregivers’ knowledge about dementia, although essential, may not be protective in itself [72]. Finally, screening for (sub)clinical disease (e.g., hypertension, preclinical diabetes) is indicated for caregivers under stress.

Is there any place here for validated caregiver assessments, such as the Zarit Burden Interview [73], the NPI-Q distress scale [74], or the two caregiver items in the Camberwell Assessment of Need for the Elderly [75]? They are helpful for monitoring issues over time and definitely as memory aids. However, there is no need to use them formally in clinical practice, as they are no substitute for eye-to-eye empathic explorations. Scores do not replace clinical judgment, like that derived from sensible and timely interviewing: How are things going now? What has been the hardest? What has been positive, despite all the difficulties? What has been helpful? Who can you rely on? What have you been told about your relative’s illness? Who told you? What would you like to know more about? What kind of help are you (and your relative) in need of? What about other members of your family? Understanding the meaning of the caregiver’s commitment is often the key to helping that person make constructive changes in the system [54].

Coming back to Caregiver Family Therapy principles [57], families rarely consist of only the caregiver and care recipient. Isolated caregiver outcomes cannot show the situation of an entire family. Genograms are easy to use and help the clinician “widen the lens,” by considering not only the main caregiver (accompanying the patient to the clinic or sometimes desperately showing up at the office alone) but also a broader view of family networks (Fig. 16.1). They also enable us to pick up transgenerational or “more of the same” cycles [55].

These procedures help look for maladaptive circularities implicated in BPSD. Additional examples of interesting questions are: Have there been any changes in the family that were temporally related to the worsening of symptoms? How can your family help you address them? Primary or secondary caregivers may respond to agitation or wandering by confronting or avoiding the patient, but neither is effective, and both eventually become reinforcers. Turning to couples’ issues, the classic problems surrounding infidelity delusions may stem from the person with dementia feeling unattractive and unwanted, projecting onto a spouse who reacts with surprise, resentment, and finally hostility: the feelings of each partner inevitably influence the other, in a feedback loop of anger [76].

All assessments are necessary steps toward whatever interventions may be possible, but they are also forms of intervention per se. Sometimes, assessments (systemically) determine changes in the family that turn out to be helpful. For instance, as Peisah puts it [55], simply having family members sitting in the same room, respectfully listening to each other, is sometimes the most difficult task. This may lead naturally to finding common ground (if people come together to a family meeting, they are willing to find a way out of problems) and to opportunities for positive reframing (e.g., when one shouts at another, it is because they do care and worry about difficulties), which are mainly systemic techniques. Again, simply asking about family needs is a way of showing interest and compassion.

Ideally, caregivers should be encouraged to: adopt respectful and tolerant attitudes toward the person with dementia, allowing them a perception of self and control of the environment; understand the cause(s) of and meaning of the BPSD; and be flexible and accept change, maintaining a certain sense of humor [35]. Simple behavioral management, as based on ABC analyses (Antecedents, Behavior, Consequences), may help. Solutions include minimizing environmental triggers, increasing positive attitudes, improving mood, and reinforcing appropriate behaviors [54]. A patient may be “encouraged” to shout, because when he shouts he always gets attention. Withdrawing rewards will help, but the meaning of shouting must be explored: extra attention may be the clue, but should be given at times when behavior is not disruptive. Attention should be paid to consistency in “behavior modification,” as well as to the sort of reward and its tailored timing (it cannot be delayed) [77].

Lipton and Marshall [78] offer a discussion of common sense rules and practical tips in BPSD (while advising caregivers). A few adapted examples will serve here. First, “you’ll never win an argument with a patient with Alzheimer’s disease.” Refrain from reprimands; distraction works wonders. You do not have to answer the same question over and over. Be simple and direct. Second, if a problem cannot be completely avoided, perhaps it can be minimized. Third, when caregivers turn into “obsessive micromanagers,” losing sight of the forest for the trees, or into “martyrs,” this may relate to unconscious defenses in the face of strong unpleasant emotions. As with denial, it is hard to penetrate these defenses and often counterproductive to interpret them directly. Sometimes the patient even needs a break from the caregiver, and help may come from other family members stepping in and providing assistance [78]. In our case, despite Maria’s presumable reluctance, one of her children, or even her daughter-in-law, could make specific offers of help and spend a day (or more) in the primary caregiver’s shoes. Parents often minimize their burden and reject offers of help from others, including their adult children. Continuously acknowledging Maria’s importance as the primary caregiver is paramount, preserving her sense of purpose.

As Zarit and Femia put it [79], caregiving in itself is not pathologically linked to adverse outcomes. Caregivers’ profiles should be considered in order to focus on those at risk (e.g., if depressed) and to adapt interventions to their specific needs [79] and those of their family systems. Van Mierlo and colleagues reported on an evidence-based implementation model and checklist for personalized dementia care in the community, emphasizing how interventions should adapt to personal characteristics of patients and informal caregivers [80].

Caregiving-oriented approaches, including support or psychoeducation, can be of use to most families in need. Systemic family therapy, be it structured or not, will help those with long-standing difficulties that predated dementia or where the burden of BPSD heavily disrupts the family structure or dynamics. The choice of intervention will be guided by a careful weighing-up of indications, but also by the availability of trained staff and access to services. If a referral outside the team is required, communication among all professionals involved is sometimes the bigger issue. Problems with staff communication sometimes mimic those within families in pain. When users get lost within complicated health and social service networks, no effort is too great if it ensures supportive, “holding,” collaborative therapeutic environments. Zarit and Zarit proposed a conceptual framework for integrated family work in dementia. This includes initial assessment, as a starting point for three different strategies (providing information, structured problem-solving skills, and support) through three different modalities (counseling, family meetings, and groups) [54]. Overall, the elements of success entail focusing on the person with dementia as well as the caregiver and on skills building along with education and support. Interventions should be multidimensional, flexible, tailored to needs, of sufficient duration and intensity, followed up with booster sessions, and delivered to families in their own homes or as preferred [35, 50].

Outside the health services themselves, Alzheimer’s associations are a very important form of help and one that clinicians should not neglect. Many of the national organizations provide, e.g., help notes to assist in coping with BPSD (increasingly available online), telephone helplines, and the possibility of joining support groups and even of specialized help. Nowadays, in addition to the webpages of Alzheimer’s Disease International and local organizations, there is a growing volume of high-quality online materials. One example is the Dementia Collaborative Research Centres website, an Australian Government initiative based at the University of South Wales, which provides a complementary, easy-to-access educational resource for both clinicians and caregivers (e.g., apps like “Care4Dementia”) [81].

Not all clinicians (actually, only a few) will ever be engaged in structured family work. However, all should be family sensitive [54] enough not to disregard the most striking unmet needs (e.g., regarding information or psychological distress in family members) or to miss the opportunity to gently address some family maladaptive responses that may be contributing to BPSD. “Gently” means trying to change unhelpful behaviors through noncritical, collaborative approaches. A positive attitude is crucial, acknowledging that a family member may be doing the best they can in the circumstances. This basic assumption implies, for instance, considering EE in family relatives as “emotional exasperation” rather than a trait (incidentally, EE toward patients or family members can often occur in well-intentioned staff facing clinically challenging BPSD). “Gently” also means asking what has been tried without success and then asking the primary caregiver or some other family member for alternative suggestions, reinforcing these or others as fallible but possibly helpful. It also means praising all appropriate efforts. All this should be done before too easily suggesting “the right way to do it” or only generically insisting on “patience with the patient” – approaches that may (implicitly) disqualify or criticize the caregiver.

The family-sensitive clinician will start by asking a few decisive questions. Only by doing this can they claim to be really empathic, failing which they will run the risk of not even understanding what the main motivations for caregiving are. They will also know that although it may not be feasible to interview a whole extended family, hypotheses regarding opportunities for intervention with other family members may be worthwhile. They will try to encompass the whole family system and not only the patient-primary caregiver dyad. In the absence of perfect solutions for some dilemmas, they will avoid becoming an advocate for one party [54].

Finally, the family-sensitive clinician will remain empathic and compassionate toward families, even after referring them to structured forms of help. The family is still the clinician’s interest and responsibility, and he/she will try to be there when the situation changes, providing a model of resilience and instilling realistic hope. In practice, the reader is invited to always “think family,” even though the family is not the focus of all BPSD-related interventions.