Chapter 24. Working With Families of Older Adults
© American Psychiatric Publishing
No single model exists for working with families of older adults. Clinicians need to provide both patients and families with person- and family-centered assessment and treatment, taking into account issues of context, diversity, and heterogeneity. Despite the need for family-specific treatment, there are patterns of family issues that consistently emerge based on trajectories of psychiatric illness. Perhaps the most specific guidance in the literature comes from meta-analyses and reviews of clinical research on families of older adults with progressive degenerative dementias (Adelman et al. 2014; Gallagher-Thompson and Coon 2007; Gillick 2013; Pinquart and Sörensen 2006b; Reinhard et al. 2012; Weimer and Sager 2009).
Over the course of an older adult’s degenerative dementia, families will confront depression, delusions, agitation, behavioral changes, and other psychiatric symptoms in their cognitively impaired relative (Gitlin et al. 2012; Lyketsos et al. 2000; Olin et al. 2002; Tractenberg et al. 2002). The burden on the family can be great, information can be insufficient, and doubt can be overwhelming (Gwyther 2000). Families who are caring for older members with dementia need reminders from psychiatrists to focus on maintaining family quality of life as well as quality of care within the constraints imposed by psychiatric, functional, and behavioral changes (Hughes et al. 1999).
In this chapter, we take a chronological approach to working with families over the course of the dementia of an older adult. Dementias are the focus because of ample evidence that dementia is more disruptive of family life and more likely to result in negative mental health outcomes for family caregivers (especially females) (Pinquart and Sörensen 2006a). Compared with family caregivers of older adults with normal cognition, family caregivers of older adults with Alzheimer’s disease spend more hours per week providing care, with measurable negative impacts on caregivers’ mental health, personal and family time (Langa et al. 2001), and family relationships (Gwyther 2005). Psychiatrists working with families of persons with dementia should expect to treat vulnerable primary family caregivers as well as families in conflict (Rabins et al. 2006). Alzheimer’s disease has forced long-term-care services, policy, and treatment to move from a narrow focus on aging to a more dynamic family focus that is more inclusive of the person with dementia (Batsch and Mittelman 2012).
Family Care for Older Adults With Dementia
Half of family caregivers live with the older adult over a disease course of 3–20 years. Despite the high rates of shared residence, evidence suggests that 30% of older adults with moderate to severe dementia live alone, often with extensive supervision and assistance from local and long-distance family caregivers (Tierney et al. 2004). Certain trends have emerged from studies of family care in dementia. A shift is occurring away from the direct provision of care by families toward more long-distance care or family care coordination. Dementia care may necessitate that people move to be closer to one another, and moves and daily proximity may increase stress as well. An increasing number of adult children have become primary caregivers, and many of them are still working part or full time. Although employment might lead to burdensome role overload, some caregivers experience unanticipated benefits from continuing to work. Dementia care frequently precipitates the family’s first experience with seeking help from agencies and other family members. Increasing evidence shows that the lack of an available and affordable long-term-care system is pushing the limits of family capacity and solidarity (Hurd et al. 2013).
Family care is universally preferred, as a result of strong family values that cross cultural and ethnic lines; however, exclusive reliance on family care has well-documented personal and social costs. Family caregivers may become overwhelmed, exhausted, depressed, or anxious. Many family caregivers report loss of pleasure, motivation, friends, activities, privacy, intimacy, or identity. Gradual and sometimes sudden loss of the person as he or she once was can precipitate significant ambiguous loss or disenfranchised grief in family members.
Despite the apparent investment of families in care for older adults, some families never comprehend minimal safety risks associated with dementia care. Elder mistreatment—whether abuse or passive or active neglect—may be associated with exceeding these family limits (Fulmer et al. 2005). Families may feel powerless and overwhelmed when they cannot predictably control the symptoms and course of dementia. The psychiatrist working with the family has several tasks: assessment of tolerance limits, education, treatment of psychiatric consequences of caregiver burden, and management of family expectations of the disease course and of themselves.
Despite assumptions about a single primary family caregiver, often a change in primary caregiver occurs when a spouse or partner dies or cognitively declines or when siblings pass a cognitively impaired parent among themselves in a futile attempt to equalize responsibility.
Increasing dependency, loss, and grief are realities for families caring for a loved one with Alzheimer’s disease, but not all family outcomes are negative or burdensome (Tschanz et al. 2013). Although depression and anxiety are the most frequently reported psychiatric symptoms among caregivers of Alzheimer’s disease patients, some families express pride in their care as a legacy of their commitment to family values. Recent studies report both health benefits and decrements from assuming family care (Roth et al. 2013).
The following reminders about family care may prove useful to clinicians and families:
- Family care is an adaptive challenge: the family is not necessarily the problem, nor is the family necessarily the obstacle to effective care. Few incentives (financial, religious, or counseling) will make an unwilling family assume care. The reverse is equally true: few disincentives will keep a determined spouse, partner, or child from honoring his or her commitment.
- The family rarely has one voice. Different perceptions and expectations of close and distant family members frequently precipitate family conflict. There is no perfectly fair and equal division of family care responsibility. Families can expect a permanent imbalance in the normal give and take of family relationships while working toward a more equitable sharing of responsibility.
- Few families have the luxury of only one person needing care at a time.
- Manipulation by dependent elders is much less common than are real unmet dependency needs. More underutilization of services and underreporting of burden occur than overutilization and overreporting.
- There is no one right way or ideal place to offer family care. Many families are forced to choose between equally unacceptable options. Successful family caregivers gather information, take direct action when possible, and often reframe things that they cannot change in more positive terms (e.g., “It could be worse—at least she is still with me”).
- Successful family caregivers are flexible in adjusting expectations of themselves, the older adult, other family members, and professionals as they work to fit the needs and capacities of all. Coping with family care is facilitated by a sense of humor, a strong faith or value system, creativity, practical problem-solving skills, and emotional support from other family members or friends.
- Families caring for older adults with dementia must define and negotiate complex situations, perform physically intimate tasks, manage emotions and communication, modify expectations, and capitalize on the older adult’s preserved capacities.
- A family caregiver’s awareness of an available service, need for the service, or knowledge of how to access the service does not necessarily lead to the appropriate or timely use of that service.
- There is no perfect control in a family care situation. Families are better off if they work on their reactions to stress or lack of control.
- Denial is a common defense of family caregivers. Some people need to deny the inevitable outcome (e.g., loss of a beloved spouse or partner, eventual placement of a parent in a nursing home) to provide hopeful, consistent daily care.
- A primary caregiver at home is efficient and preferred. Primary caregivers, however, need breaks, respite, backup people, and services to supplement their personalized care. Even in ideal situations, contingency plans are necessary (Derence 2005; Lund et al. 2009).
Goals in Working With Families of Older Adults
Clinical goals with families of older adults will vary depending on the presenting problems and family resources. Common goals, however, are to normalize variability, address safety issues, mobilize secondary family social support, facilitate appropriate decision making at care transitions (particularly with requests for antipsychotics or sedatives to treat the dementia patient’s agitation, aggression, or sleep disturbance), and help family members to accept help or let go of direct care as necessary. In essence, the family is forced to adapt to a new state of normal in their family life, often with resistance from the member with dementia. Well-timed psychiatric help can assist family members and elders in accepting new realities, promote appropriate decision making, and facilitate smooth care transitions.
Other goals in working with family caregivers include treating their own mood, substance-related, or anxiety disorders and providing individual and family treatment around issues of grief, loss, or conflict in family relationships that limit the effectiveness of care. In general, family treatment should enhance the effectiveness of family care and coping, the self-efficacy of caregivers (Semiatin and O’Connor 2012), and the family’s satisfaction with their preferred levels of involvement.
Psychiatrists working with family caregivers over time will monitor the quality of family care; the mental health, capacity, and vulnerability of caregivers; and the impact of the demands of care on family relationships (Sun et al. 2013). Psychiatrists should be alert to anxiety, self-neglect, suicidal ideation, depression, or anger in caregivers, as well as abuse, exploitation, or neglect of patients. These indications should prompt immediate recommendations for treatment, respite, or relinquishment of caregiving responsibilities. Exigent negative caregiver outcomes on which to focus therapy include decrements in mental health, social participation, and personal or family time, as well as loss of privacy.
Interdisciplinary Partnerships
Focused treatment with families of older adults holds great potential for positive outcomes, particularly in the context of an interprofessional partnership or team (Bass et al. 2013; Fortinsky et al. 2014). Research suggests that social workers’ individual and family counseling with spouse caregivers can mobilize and sustain community and secondary family support, reduce and prevent further primary caregiver depression, preserve caregiver self-reported health, change negative appraisals of behavioral symptoms, and even delay nursing home placement by over a year compared with a control group (Mittelman et al. 1996, 2004, 2007).
Psychiatrists may work collaboratively with social workers or nurses who can help provide timely or sustained assistance during the particularly vulnerable times of care transitions (Boustani et al. 2011). The psychiatrist’s role is to assess and treat a family caregiver’s psychiatric illness and to treat the cognitively impaired patient’s psychiatric symptoms. Over time, the social worker or nurse may provide care management and monitor family capacity and tolerance while educating the family about common symptoms and care transitions (Callahan et al. 2012).
Some families will initially resist referrals to a social worker but may become more amenable if the social worker is described as an expert consumer guide or family consultant. At care transition times, a family consultant can provide assessment, intervention, and resource information. The family consultant can help families learn how to become their own care managers and increase their level of independence in handling the requisite tasks. The consultant may serve as a teacher, coach, advocate, counselor, cheerleader, or support person who can provide energy and a fresh perspective to promote family resilience.
Referrals to well-developed and validated psychoeducational group treatment programs have demonstrated equally positive results (Hepburn et al. 2007; Livingston et al. 2013). Participation in peer counseling or support groups can have positive outcomes for active caregiver participants (Pillemer and Suitor 1996). One particularly helpful resource is the Rosalynn Carter Institute for Caregiving (www.rosalynncarter.org), which offers an Evidence-Based Caregiver Intervention Resource Center and detailed information on interventions and training that have been found to positively affect caregiver outcomes. Another is Maslow’s (2012) review of more than 40 evidence-based family interventions.
Another way to monitor goals in the psychiatric treatment of families of older adults is to base treatment on known precipitants of the breakdown of family care. Major precipitants of placement include both patient and caregiver factors (Yaffe et al. 2002). One of the patient factors that strongly predicts placement is disruptive psychiatric and behavioral symptoms. Changes in behavior and personality are also major causes of caregiver burden and depression. To the extent that psychiatric consultation is available to the older adult for treatment of psychiatric symptoms, and to the extent that the family can be taught nonpharmacological approaches (see Chapter 19, “Agitation in Older Adults”), the health of the family and caregivers and effective home care for the older adult can be preserved.
Other predictors of family care breakdown are unresolved family conflicts or mood disorders, substance abuse, or anxiety disorders of the primary caregiver. Treating depression in a family caregiver generally has a positive impact on the mood, function, and behavior of the older adult with cognitive impairment (Teri et al. 1997), and vice versa.
The Family as Information Seeker
Families are more likely than older adults with dementia to initiate and seek psychiatric care throughout the course of the illness. The stigma of psychiatric illness often delays psychiatric diagnosis (Werner et al. 2012), and ethnic and cultural beliefs that equate cognitive decline with normal aging can produce the same result. Psychiatrists must remind families that a specific diagnosis suggests treatment options. Stigma is best addressed by correcting misconceptions or lack of information. An unconvinced family can be told that Alzheimer’s disease is a brain disorder that can and does happen to anyone. The brain becomes the vulnerable organ in dementia, and psychiatric symptoms are brain symptoms just as angina is a symptom of a heart disorder. When damaged, both organs require special diagnosis and care.
Many family caregivers do not seek a diagnosis until psychiatric symptoms (e.g., suspiciousness) emerge or personality changes (e.g., uncharacteristic irritability) disrupt family life. Unfortunately, the patient is most likely to resist an evaluation once these symptoms have emerged. Psychiatrists typically are reluctant to speak with family members without the consent of the patient. An evaluation can be facilitated if the psychiatrist agrees to see the patient about a less threatening symptom, such as headaches, loss of interest, or low energy.
Diagnostic Office Visits
Although the patient is entitled to time alone with the psychiatrist initially, later time alone with family informants is invaluable to the psychiatrist as he or she assesses the effects of functional loss and other family stressors. Most family caregivers prefer to talk privately with the psychiatrist to avoid confronting the older adult about his or her symptoms and declining condition. It may be helpful to have two family members accompany the patient for an evaluation. One family member can distract or sit with the older adult while another speaks privately with the psychiatrist.
Initial Communication With Older Adults and Their Families
Initially, communication with patients and their family members will likely be in response to the common emotional reactions to learning that there is a diagnosis of degenerative dementia. One husband described the physician’s diagnostic disclosure of his wife’s early-stage Alzheimer’s as emotionally more devastating than being shot down in Vietnam. Elders and family members may also express doubt about the diagnosis. Rather than confront their doubt or denial, the clinician might suggest to them that they behave as if the diagnosis of Alzheimer’s disease had been confirmed while awaiting confirmation based on symptoms or progression of the disease. Asking directly about common early changes, such as difficulty handling money, problems managing medications, or increased irritability, may highlight expectable mental status changes while offering a preview of psychiatric expertise. Sometimes, explaining the symptoms of apathy and loss of executive function can help families understand why their efforts to get the elder to try harder at tasks are likely to prove frustrating and futile.
Initial family sessions often elicit fear from family caregivers about their interdependent future or risks of heritability. Frustration is another common theme that emerges in early family treatment. Family caregivers frequently express frustration with the elder’s obsessive need for repetition and reassurance. Clinicians can help families cope by offering information to clear up misconceptions about the presumed intentionality of the elder’s resistance. Additionally, the elder’s confabulations are typical and predictable attempts to fill in gaps for a failing memory. Encouraging the family to get angry at the disease rather than at professionals, the services, or each other can be extremely helpful. Families should be reminded that conflict among their members will only limit needed help (Coon et al. 2003). It is important for the family to understand that the elder’s realistic dependency does not imply weakness of character or lack of will. Families of patients with early or mild dementia should be encouraged to take advantage of education and support programs offered by Alzheimer’s Disease Centers and the Alzheimer’s Association (Logsdon et al. 2010). These groups provide vital information and a community for both patient and family when they may be most reluctant to share the diagnosis with family and friends. These programs, along with online and written materials, help both the patient and the family care partner to reduce the risks associated with early isolation, reduced social engagement, and lack of meaningful activity.
Fatigue and exhaustion are also common issues. Encouraging rest, respite, exercise, and energy economies can be helpful for family members. Another common theme in family work is the guilt that family members feel about losing patience or missing early opportunities to recognize distress in a relative. They appreciate reminders from clinicians that everyone experiences regret based on unique but certain limits. Most well-intentioned families seeking psychiatric treatment have done what seemed best, given limited information at the time. They can be reminded that it would have been worse if they had done nothing.
Families overwhelmed by guilt benefit from specific reminders to expect and accept negative feelings and resentment, to forgive themselves when efforts go awry, to establish time and energy priorities based on current quality of life preferences, to set limits, to say “no” and mean it, and to act from love or a values commitment. If helps for them to be reminded that regret is inevitable, but often unexpected resilience can help family members pick themselves up and learn from personal experience and from the experience of others in a support group.
After the psychiatric evaluation, key themes should be highlighted and repeated in writing for absent family members. Older spouses in first marriages are generally more comfortable facing threatening health information together, and one spouse may be put off by attempts to separate him or her from the impaired spouse. Providing the same information to both spouses at the same time helps older couples preserve their couple identity and accept the psychiatric recommendations as a mutual and shared adaptive challenge.
Family Expectations of Psychiatrists
Vulnerable family caregivers may seek a private place and time, undivided professional attention, and the comfort of initial familiar, polite small talk. Families want psychiatrists to listen without rushing to implied understanding or suggestions. Families of older adults expect to be asked what they have tried in coping with their relative’s impairment. Even more, these families appreciate the psychiatrist’s asking about what else is going on in their lives.
Wandering and getting lost are common symptoms of dementia. Caregivers may expect expert advice and immediate cures for these disruptive symptoms, and they often seek explanations about why medications do not “treat” wandering as well as environmental, communication, and activity strategies do. They need specific referrals to the Medic Alert + Alzheimer’s Association Safe Return program (www.alz.org/care/dementia-medic-alert-safe-return.asp). They also need help in accepting respite to cope with the toll of prolonged hypervigilance required to protect from wandering.
Families of older adults want psychiatrists to tailor information and education relevant to their immediate, pressing concerns. For example, a family concerned about the combative behavior of an older adult may be helped by a psychiatrist who responds, “First, let’s get the guns out of the house” (Lynch et al. 2008).
When depleted primary caregivers are confronting the range of behavioral symptoms of an older adult with Alzheimer’s disease, they may look to the psychiatrist to lend positivity, optimism, a proactive attitude, perspective, and objectivity. They may want acknowledgment of their contributions to the older adult’s quality of life and forgiveness for what they were unable to accomplish despite their best intentions. The psychiatrist must be careful with well-intentioned attempts to commend families for doing “a great job.” A family caregiver might be quick to point out, “I am not performing a job—I am her husband, and I promised to take care of her in sickness and in health.”
Families also appreciate preventive self-care reminders from psychiatrists, but vague suggestions that caregivers need to take care of themselves often frustrate overwhelmed families that have few resources. Family members need help translating principles of respite and meaningful use of respite time in ways that are congruent with their personal values and cultural expectations. Specific examples may help. For example, some family members respond to statements such as “Family care without respite is like expecting your car to run on empty—it doesn’t” or “Even the Lord rested on Sundays.” Respite options can be presented as opportunities to “recharge your battery” (Gitlin et al. 2006).
Also, increasing evidence shows that encouraging physical activity (King and Brassington 1997; Teri et al. 2003) and actively assessing and treating sleep disorders in older adults and their family caregivers are associated with positive care and family outcomes (McCurry et al. 2005, 2011).
Families look to psychiatrists for support in making certain decisions and may ask for help in mobilizing other family members. Expertise in family communication and family systems theory is particularly helpful and relevant at these junctures (Eisdorfer et al. 2003). Family caregivers expect psychiatrists to let them express feelings even when these feelings are judged to be unacceptable. They may want help managing anger toward the older adult, other family members, service providers, or God. These families appreciate psychiatrists who create new choices by reframing the problem or situation. For example, a family caregiver may seek permission from the psychiatrist to be less than perfect or a “good-enough-for-now” family caregiver. At such times, a psychiatrist’s use of humor and compassion can produce dramatic relief.
Assessing the Family of an Older Adult
A targeted assessment of the family of an older adult may result in referrals to Alzheimer’s Association services, private or public geriatric care management, family or peer counseling, home help, day programs, assisted living, or nursing home care. Cultural values, expectations, and health beliefs will influence how and when families decide to pursue referrals, as well as their receptivity to family treatment by psychiatrists. Pinquart and Sörensen (2005) investigated the ethnic differences in stressors, resources, and psychological outcomes of family caregiving. They suggested that more specific theories are needed to explain some of the differential effects of minority groups of caregivers. In addition to ethnic minorities, other groups that deserve clinical and research attention are older adults, partners, and families with issues of sexual and gender diversity. In many regions of the country, gay, lesbian, bisexual, and transgender (LGBT) communities still do not have legal protections or fully sanctioned empowerment to make care decisions for their partners or families. Some helpful resources are the National Resource Center on LGBT Aging (www. lgbtagingcenter.org), the Family Caregiver Alliance’s LGBT Caring Community Online Support Group (www.caregiver.org/lgbt-caring-community-online-support-group), and Services and Advocacy for Gay, Lesbian, Bisexual and Transgender Elders (www.sageusa.org).
One of the most useful ways to elicit a picture of family functioning is to ask the family to describe a typical day. Clues about how much time the patient is left alone and about potential safety risks come from such open-ended questions. The psychiatrist should probe further if the caregiver hints about increased use of alcohol or psychoactive medications in response to stress. Older husband caregivers may be particularly at risk of increased alcohol use in response to care demands.
The psychiatrist should encourage or support positive activities such as regular exercise, social stimulation, and secondary family support. A person caring for his or her partner may be frustrated by the other’s loss of interest in cooking. A suggestion to try regular meals at a familiar restaurant may conserve the couple’s energy and better meet their nutritional and social needs.
Asking questions about a typical day may elicit family anger at the patient’s apathy and social withdrawal or reveal a family’s lack of awareness of safety issues. The family may complain that the older adult with cognitive impairment is becoming more irritable or jealous of grandchildren. Probing further may reveal that this grandparent is still providing child care despite significant declines in his or her judgment or capabilities.
It is important to assess the home and neighborhood environment. People with dementia are easy targets for exploitation by telephone and mail fraud and from people who come to the door. High-crime neighborhoods pose additional risks. An older adult who spends time at the corner store buying alcohol and cigarettes may be especially vulnerable.
The psychiatrist should ask specifically about the primary caregiver’s health. The psychiatrist should be alert to offhand comments such as “I’m fine as long as he can drive me to chemotherapy.” The caregiver should be asked about his or her own sleep and how it is affected by the sleep pattern of the adult receiving care. Many family caregivers report being frustrated, overwhelmed, edgy, or exhausted but will deny having depression, anxiety, or psychiatric symptoms. Although psychiatrists are well advised to respond promptly to poorly controlled rage or suicidal or violent threats, skillful probing may be required to elicit other symptoms.
A review of family relationships may elicit new or historical family conflicts that can complicate care. For example, a distant, estranged sibling might insist that the family caregiver is exaggerating symptoms in an attempt to take control. A written explanation from the psychiatrist about actual dependency and level-of-care needs can help clarify the situation, corroborate the caregiver’s experiences, and give credence to what is truly needed.
Another key to effective family assessment is to ask about other family commitments. For example, a daughter backing up her mother’s care of her father may be distracted by anxiety about her own husband’s failing business or a child’s drug addiction. Cultural expectations must be carefully assessed along with each family member’s subjective perceptions of financial resources. When paid or formal services are needed, family decision making is often related to subjective perceptions of future financial adequacy rather than the objective cost or affordability of services. Some family members may be saving for a rainy day, whereas others may value preserving their inheritance above meeting the elder’s current care needs.
It is wise to assess family strengths, skills, and goals. For example, some families may cope well with providing care for incontinence or end-of-life care but be unable to tolerate the disruptive behaviors or sleep patterns of moderate dementia. Families that have coped with chronic mental illness or substance abuse in other family members may have well-developed coping strategies or support systems (such as Alcoholics Anonymous) that can help them adapt to care for their impaired elder.
Finally, assessment should include some review of the family’s experience with previous and current help from family members or paid services. Some key issues include the adequacy, quality, cost, and dependability of the help. For example, if a previous home care worker stole from them or failed to show up, the family would be less likely to accept another home care referral. Previous family conflict over elder care is likely to limit the family’s willingness to ask for help. If a family believes that the help they give each other is adequate, dependable, or sufficient, they often are unwilling to consider formal services because they do not perceive a need.
Selecting Interventions for Families of Older Adults
Families of persons with dementia need a continuing source of reliable information. Referrals to the Alzheimer’s Association (www.alz.org) and the Alzheimer’s Disease Education and Referral Center of the National Institute on Aging (www. nia.nih.gov/alzheimers) help meet this need.
Multidomain interventions have been shown to enhance positive caregiver outcomes (Belle et al. 2006). The most effective of these interventions for family caregivers emphasize problem-solving and/or active participatory skill-building strategies for behavior change over purely didactic educational approaches. Effective multidimensional approaches are flexible and tailored to individual risk factors. They are timed to key transition points or stressors in care trajectories and are offered in sufficient dosages or amounts of assistance over time to ensure sustained outcomes. Combining individual and family counseling, family education, support group participation, and care management is associated with decreased caregiver burden and depression. This also results in decreases in the elder’s disruptive symptoms and increases in caregiver satisfaction, subjective well-being, and self-efficacy. Psychoeducational and psychotherapeutic interventions produce the most consistent short-term effects on all outcome measures (Burgio et al. 2003). For example, a multimodal approach for treating an elder’s agitation could include treatment of depression in the elder or in the family caregiver with pharmacological and nonpharmacological strategies; participation by the family caregiver in psychoeducational, skills training, or caregiver support groups; and participation by the elder and the family caregiver in structured exercise programs.
Nonpharmacological approaches to the treatment of depression in elder care family dyads could be based on increasing the frequency of individually selected pleasant events (Teri et al. 1997). Once the elder and caregiver have identified which activities are the most enjoyable, the goal becomes one of increasing the frequency and duration of these activities. In a dyadic intervention study, Whitlatch et al. (2006) found that individuals with early-stage dementia and their family caregivers were able to participate in and benefit from a structured intervention that focused on care planning for future needs.
Referrals to support groups should be balanced, and participation should not be oversold. Benefits of participation in support groups are derived from experiential similarity, consumer information, coping and survivor models, expressive or advocacy outlets, and (for some participants) the creation of substitute family or social outlets. Participants may know more about Alzheimer’s disease and services but may not necessarily use that information. Also, participants may feel less isolated and misunderstood than nonparticipants. Clinical experience in working with families over time suggests that for some families, support groups provide a low-cost, readily available venue to share difficult feelings such as anger, regret, and frustration. Support groups can be a safe place to express disappointment in services, professionals, or other family members. Well-facilitated support groups help families recognize that they are not failures and to receive immediate practical help unavailable elsewhere. Increasingly, online discussion or e-mail groups or chats are serving a similar purpose. There are, however, few evidence-based studies documenting the benefits of caregiver support group participation.
One support group does not fit all. Black individuals frequently do not feel the need to talk about family business among strangers but may respond to a church-based group on family care. In an open mutual help group with revolving membership, not all participants will be dealing with the same care issues. The exclusive focus on Alzheimer’s disease as just one aspect of family life may not meet certain families’ needs. Some families cannot get to meetings regularly, and some groups are not consistently available. These factors limit the benefits of such a minimalist intervention. The benefits of participation can be enhanced by encouraging families to shop around for a group that best meets their needs and reminding them that they may be able to obtain comparable social support from groups to which they already belong, such as a church, synagogue, employee, or retiree organization.
Information available online is useful for seeking resources at care transition points as well. For example, if placement becomes an issue, information about quality care and finding nursing homes and assisted living facilities is available online from Centers for Medicare and Medicaid Services (www.medicare.gov/Publications/Pubs/pdf/02174.pdf) and the National Consumer Voice for Quality Long-Term Care (www.theconsumervoice.org). State ombudsman offices also offer online information about local facilities. Online discussion boards and Alzheimer’s disease–focused discussion groups can be helpful as well.
Educational Strategies With Families of Older Adults
Many families are too overwhelmed at a first psychiatric consultation or diagnostic evaluation to absorb information or instructions. Teachable moments with family members come at crisis points with specific psychiatric symptoms, such as when an older individual with dementia makes accusations of family theft or spousal infidelity or when the patient insists that his or her spouse or partner is an imposter. A medicine metaphor is appropriate: the timing and “dosing” of information may enhance effective use of that information in adapting care over time. Some families may have read or heard inaccurate or partially correct information about symptoms that can be easily corrected. Some may have heard myths that all elderly persons with dementia are aggressive. Some families have been overwhelmed by too much questionably credible information online. Just like medication management in geriatrics, the maxim “start low and go slow” applies equally well to family education about dementia. Overwhelming families with too many treatment suggestions or referrals is just as likely to lead to poor compliance as is changing multiple medication regimens all at once. Finally, information should be presented in hopeful terms, such as “Treating your depression should have positive effects on your partner’s mood as well” or “Many families surprise themselves with their resilience.”
The presentation of information in a timed and dosed manner also offers opportunities for repetition of key themes. The key messages for family caregivers listed in Table 24–1 can be presented at intervals and in “doses” that are based on the frequency of contact with the family, the family’s need to know, and the family’s capacity to understand.
Educational Strategies With Families of Older Adults Key messages for family caregivers
1. Be willing to listen to the older adult, but understand that you cannot fix or do everything he or she may want or need. Know that it will not necessarily get easier, but things will change, and the experience will change you forever.
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2. You are living with a situation you did not create, and your choices are limited by circumstances beyond your control. Seek options that are good enough for now.
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3. You can only do what seems best at the time. Identify what you can and will tolerate, then set limits and call in reinforcements. Doubts are inevitable.
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4. Find someone with whom you can be brutally honest, express those doubts and negative feelings, and move on.
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5. Solving problems is much easier than living with the solutions. It is tempting for distant relatives to second-guess or criticize. Hope for the best but plan for the worst.
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6. It is not always possible to compare how one person handles things with how another relative would handle them if the positions were reversed.
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7. The older adult is not unhappy or upset because of what you have done. He or she is living with unwanted dependency. Sick people often take out their frustration on close family members.
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8. Considering what is best for your family involves compromise among competing needs, loyalties, and commitments. Everyone may get some of what he or she needs. Think twice before giving up that job, club, or church group. Make realistic commitments, and avoid making promises that include the words always, never, or forever.
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9. Find ways to let your older relative give to or help you. He or she needs to feel purposeful, appreciated, and loved.
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10. Take time to celebrate small victories when things go well.
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Responding to Families Over the Course of Progressive Impairment
Over the course of a patient’s dementia, family caregivers become not only information seekers but also care managers, consumer advocates, surrogate decision makers, and health care providers. It is difficult to negotiate these complex roles, but it is even more difficult if the family caregiver is burdened by role overload. Assessing caregiver vulnerability can be facilitated by asking family members to self-assess their pressure points or signs of increasing caregiver overload (U.S. Department of Veterans Affairs 2014).
Clinical red flags may signal imminent danger resulting from the caregiver’s precarious health. Unsubtle hints may be a caregiver’s comments such as “after my last stroke,” “before he totaled the car,” or “sometimes I feel like just letting him wander away.” Pursuing these threads with standard clinical protocols is certainly warranted.
Other issues surface when working with families of moderately impaired older adults. Isolation of the caregiver and patient is common as friends drop off in response to disruptive behavioral symptoms or the need for constant supervision of the older adult. Families need to be reminded that being vulnerable does not make older people grateful or lovable and that cabin fever among cohabitating elders and family caregivers can be a real threat to mental health and safety. Families are especially sensitive to elders who confuse or mistake family identities or suggest that family members are impostors. Making suggestions that family caregivers say something like “I’ll try to do it like your mother would” may help them understand and respond to accusations of this type.
Family members need to be warned not to give up cherished activities—social engagement has positive mental health effects at any age. Maintenance of a strong religious faith or community has also been shown to have positive effects on elders and family caregivers. Expressive outlets such as sports, the arts, or advocacy can help families cope with frustration and anger. Prayer, meditation, exercise, massage, and yoga, in combination with active treatment of depression or anxiety, are all worthy treatment recommendations. An older person’s participation at an adult day center can be presented to the family as a source of social stimulation for the elder and a stress-reduction strategy for the family caregiver (Zarit et al. 2014).
Helping Families Assess Capacity of Older Adults
Many families turn to psychiatrists to assess the judgment and decision-making capacity of older adults, whether the concerns are related to handling money, making health decisions, living alone, or driving. Money-handling and health care decisions should be addressed soon after diagnosis to ensure time for patients to select a surrogate. Often families seek psychiatric consultation when family conflict surfaces over the patient’s selection of a surrogate or the surrogate’s handling of the older adult’s funds. Questions about whether the patient had sufficient capacity at the time he or she wrote a will or assigned power of attorney can become adversarial and unrelated to family treatment.
Effective work with families regarding capacity should be done early with a preventive focus. It is wise for one family member to make sure bills are paid. This can be done with different levels of the patient’s involvement, from making decisions about which bills to pay to signing checks or establishing payeeship.
The clinician can encourage the family to assess driving capacity based on observations of the patient’s current driving and provide the family with reminders that dementia affects judgment, reaction time, and problem solving. Psychiatric assessment of the patient or a more intensive driving evaluation from a trained occupational therapist, along with current observations from the family, will provide direction on when the patient’s driving should be limited. Unfortunately, by the time there is evidence of a decline in driving abilities, many patients cannot adequately report or judge their safety on the road. Anonymous reports to the Department of Motor Vehicles may or may not lead to required testing or removal of the patient’s license, but the absence of a license, taking of the keys, or even dismantling the car rarely stops a determined older adult with dementia.
Driving is one area in which the family must be encouraged and prepared to assess the patient’s capacity over time. The signs of decline in driving skills listed in Table 24–2 may help guide family observations and reports to the psychiatrist.
Assessment of and Limitations on Driving Signs of decline in driving skills
Incorrect signaling
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Trouble navigating turns
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Moving into the wrong lane
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Getting confused about exits
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Parking in inappropriate places
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Driving at inappropriate speeds
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Delayed responses to unexpected situations
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Failure to anticipate dangerous situations
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Scrapes or dents on car, garage, or mailbox
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Becoming lost in familiar places
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Arriving unusually late from a short-distance drive
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Receiving moving violations or warnings about near misses
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Confusing the brake and the accelerator
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Stopping in traffic for no apparent reason
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Psychiatrists may suggest a range of successful ways to limit driving, such as the following:
- A prescriptive reminder to stop driving can be tempered with a qualifier such as “until we determine your diagnosis or treatment.” Families appreciate a physician’s willingness to be the source of such unwelcome news. However, patients have been known to keep driving, making comments such as “That doctor doesn’t know anything.” Families also report that patients are unlikely to “forget” those responsible for taking their keys, and patients may continue to blame family members for loss of driving independence.
- Shaving the patient’s keys, substituting an incorrect key, removing a distributor cap, or otherwise disabling a car can sometimes reduce the need to confront the patient with lost skills. However, patients have been known to fix the car, replace the keys, or even buy a new car while the old one was “in the shop.”
- The car could be sold, given to a grandchild who needs it for school or work, moved to an undisclosed location, or put up on blocks. One family of a taxi driver put the taxi on blocks in the backyard to help the patient remember that it was “broken.”
- The family can also arrange for solutions that limit the need for driving—delivery services, senior vans, or offers of regular rides to church or for visits. Some families find that a taxi charge account or a privately hired driver or helpful younger family member to drive and escort the patient works best.
Addressing Questions of Capacity to Live Alone
Families may go to extremes to keep an older adult with dementia in a familiar environment, allowing values of autonomy and choice to temporarily trump safety. The psychiatrist, in addition to performing a psychiatric assessment of the patient’s cognition, judgment, functional impairment, and decision-making capacity, can suggest that the family consider the following questions:
- Can the family member with dementia use the telephone to call for help from a family member or to call 911? Will the person respond inappropriately to telemarketers or to mail or e-mail scams? Have mysterious packages or bills for unusual items begun appearing? Does the person make repetitive calls every few minutes to the police or to the same family member at work or at home? Are any suspicious new friends accompanying the patient to the bank?
- Can the family member with dementia get to the store or to his or her regular activities? Does the patient overbuy or underbuy certain items?
- Can the individual handle money and pay bills or, if not, is he or she willing to let others do this for him or her or have bills forwarded or paid online?
- Can the patient take medicine appropriately, on time, and in correct doses? Does he or she self-medicate or risk overdoses of unnecessary medications?
- Is the family member bathing, changing clothes, and dressing appropriately for the weather?
- Is the person leaving the house after dark or traveling in dangerous areas alone? Does the patient let strangers in or buy from or contribute to questionable causes based on visits to his or her home?
- Is the person having problems positioning his or her body to use a toilet, or is he or she urinating in wastebaskets or outdoors?
- Is the patient falling or getting lost by wandering outside a safe area?
- Are there significant changes in the family member’s appetite, weight, sleep, appearance, or eating habits?
- Is discreet surveillance by neighbors, friends, or family readily available?
The last question regarding discreet surveillance is paramount. Persons with moderate dementia may live alone successfully if they have regular contact with, surveillance by, or checking from neighbors or family members. Environmental demand varies considerably and must be assessed along with patient variables.
Families and Institutionalization of the Older Adult
Family stress does not stop at the door of the nursing home. Indeed, ample evidence shows that families experience great burden, disruption, and conflict in the time immediately before and after placing their family member in assisted living or a nursing home (Gaugler et al. 2009). Family members may seek psychiatric services to deal with guilt and grief, and often with their anger toward the nursing facility, the lack of affordable care options, and each other. Many families are disappointed by the lack of medical or psychiatric treatment available to residents of assisted living or nursing homes. Families should be encouraged to work with the facility and the nursing home ombudsman while dealing with their affective, anxiety, and grief symptoms.
Conclusion
Clinical work with families of older adults is about helping them adapt to change, uncertainty, variability, and loss. Much of psychiatric treatment of families helps them modify expectations for new dependency while learning to forgive themselves and others for inevitable doubts and mistakes. Interprofessional partnerships and teamwork with the Alzheimer’s Association, with health care or primary care coordination or care transition (medical home) initiatives, or with nurses or social workers offer the most effective and efficient models for psychiatric services to families of older adults. There is often as much need for “timed and dosed” patient and family education as there is need for treatment of psychotic, depressive, anxious, or other psychiatric symptoms or syndromes of the elder or family members. Families expect psychiatrists to provide active treatment and monitoring of psychiatric symptoms, reassurance, interpretation of information, and referrals. In addition, it is always helpful to acknowledge losses and contributions to care by individual family members, to encourage caregiver self-care, to offer authoritative absolution for inevitable mistakes, and to offer decisional support, especially in regard to transitions in care, including a move to palliative or hospice care.
Key Points
- Psychiatric treatment of families helps them modify expectations for their family member’s progressive cognitive decline and learn to forgive themselves and others for inevitable doubts and mistakes.
- Interprofessional consultation, partnerships, and teamwork with the Alzheimer’s Association and with health, aging, and social services offer the most effective and efficient models for psychiatric services to families of older adults.
- Psychiatrists should provide active treatment and monitoring of family caregivers’ psychiatric symptoms, outline reasonable expectations, and offer families information about outcomes of treatment.
- It is helpful to acknowledge family caregivers’ losses and their contributions to care. It is also important to encourage their own self-care and to offer them expert decisional support during transitions in care.
