All over the world, the family is the cornerstone of care for older people who have lost the capacity for independent living. In four of the most populous states alone (Florida, California, New York, and Texas), unpaid caregivers annually provide care valued at more than $14 billion (Alzheimer’s Association, 2016).
The majority of people with dementia live in the community, and for approximately more than 80% of these individuals, care is provided by family, friends, or other unpaid caregivers. Approximately 15 million Americans are caring for a person with Alzheimer’s disease or another dementia. The largest proportion of those caregivers is spouses, followed by children and children-in-law, mostly female. The typical profile of a dementia caregiver is a middle-aged or older female child or female spouse of the person with dementia (Alzheimer’s Association, 2016).
In many developed countries, the vital caring role of families and their need for support is often overlooked. In developing countries, the reliability and universality of the family care system is often overestimated. Family caregivers are often cast into the role of caregiver unexpectedly and are largely unpaid or “nearly” unpaid. Currently, about half of people who need help with personal care have dementia (ADI, 2013).
Caregivers who are women may experience slightly higher levels of burden, depression and impaired health than men. Evidence suggests that these differences arise because female caregivers tend to spend more time caregiving, take on more caregiving tasks, and are more likely to care for someone with a greater number of behavioral problems (Alzheimer’s Association, 2016).
Changing attitudes and expectations among the young, increased workforce mobility, and declining fertility rates mean that family members are less available for informal care for their older adult relatives. The education of women—the majority of informal caregivers—has led to more workforce participation. All these factors have put the system of informal, unpaid care under pressure as fewer young people are unwilling or unable to care for older adults (ADI, 2013).
Caring for a person with dementia is a huge commitment and places both financial and physical strain on family caregivers. On average, caregivers spend 14 hours per week assisting with basic ADLs and up to 43 hours per week when more complex assistance and supervision are needed (ADI, 2013).
Caregivers of people with dementia provide care for a longer time, on average, than caregivers of older adults with other conditions. They are more likely than caregivers of people without dementia to provide help with self-care and mobility and health or medical care. Yet half of caregivers of people with Alzheimer’s disease or another dementia indicate they have no experience performing medical or nursing tasks (Alzheimer’s Association, 2016).
Caring for a person with dementia also means managing symptoms that caregivers of people with other diseases may not face, such as neuropsychiatric symptoms and severe behavioral problems. Family caregivers often lack the information or resources necessary to manage the increasingly complex medication regimens for people with dementia (Alzheimer’s Association, 2016).
In the early stage of dementia, family members are confronted with many issues, worries, and concerns and must adjust their own behavior and manage their own frustrations as they learn about dementia. They are often unaware of available dementia-care services and may find their family member’s primary care physician is of little help.
Spouses who care for a person with dementia may not be in good health themselves and may worry about not being able to provide good care as the dementia progresses. An adult child caregiver will be concerned about having to take over the care of the parent and assume a new role in the family.
Nevertheless, caregiver burden is usually manageable in the early stages of dementia. Direct care is generally not needed and caregivers can often leave their family member alone for periods of time.
Early, specialized training is recommended for family caregivers. This is an essential but often neglected component of dementia care. Training can prepare family caregivers for what lies ahead and allow them to more easily partner with healthcare providers to provide competent and compassionate care.
In the middle stages, behavioral and psychological problems will likely arise, requiring complicated decisions about behavioral interventions and, perhaps, medications. Family caregivers often have to cut back on employment as the demands of caregiving increase.
As the dementia progresses from the mild to moderate stage, caregivers begin to invest more time, energy, and money, which involve exhausting tasks leading to high levels of burnout. Depression, along with symptoms of burnout, poor self-rated health, highly perceived stress, and lower levels of life satisfaction are factors that begin to affect the caregiver’s health. Family caregivers are also less likely to engage in preventive health behaviors. As a consequence, they are at risk for serious illness, increased emergency department use and hospitalization, and increased risk of mortality (Lykens et al., 2014).
Family caregivers’ cumulative stress is also associated with increased nursing home placement, institutionalization, or hospitalization of the patient with dementia. Thus, caring for a patient with dementia can undermine the health and well-being of both the patient and the caregiver (Lykens et al., 2014).
In the late stages, as people lose the ability to talk clearly, family caregivers will struggle to find new ways to communicate as their loved one uses fewer and fewer words. Caregivers must learn to interpret facial expressions for sadness, anger, or frustration, and physical gestures such as grasping at undergarments, which may communicate the need to use the bathroom.
The demands of caregiving intensify as people with dementia approach the end of life. In the year before the person’s death, 59 percent of caregivers felt they were “on duty” 24 hours a day, and many felt that caregiving during this time was extremely stressful. One study of end-of-life care found that 72 percent of family caregivers experienced relief when the person with Alzheimer’s disease or another dementia died (Alzheimer’s Association, 2016).
One of the most difficult issues—usually in the middle to late stages of dementia—is the decision to place a family member in residential care or skilled nursing. There are a number of reasons cited by caregivers for placement:
Relinquishing full-time care can cause feelings of loss, sadness, resignation, and depression for family caregivers. Paradoxically, placement of a loved one in a care facility may do little to alleviate the stress that caregivers experience.
Once a family member has moved to a care facility, family caregivers must begin learning to navigate a complicated healthcare system. Healthcare workers can support family members by determining the preferences, abilities, and resources of each family member. Regular face-to-face meetings with family members and facility staff will help families work through difficult conflicts.
The diagnosis of dementia affects the person with dementia as well as family and friends. Grief is related to uncertainty about the course of the disease and anticipated loss of independence. Grief can manifest itself in physical symptoms such as shortness of breath, headaches, fatigue, a feeling of heaviness, and a lack of energy. Psychological symptoms will almost certainly develop including depression, anxiety, insomnia, and loss of interest in normal hobbies and activities. These issues can lead to self-destructive behaviors, such as alcohol or drug abuse.
Losses for the person experiencing dementia include:
Losses for family members and caregivers include:
In the early stage, supportive interventions to address grief should include counseling, assessment of co-morbid conditions, education and training, and development of a care plan.
There may come a time when person with severe dementia may need to be moved to a care home. This can cause tremendous stress and grief for the person with dementia and for family caregivers. People with dementia newly admitted to an institution are often disoriented and disorganized in their new environment and feel a loss of control over their lives (Vroomen et al., 2013).
When a loved one dies, family members (especially spouses) experience a period of acute grief that can include intrusive thoughts,* intense emotional distress, and withdrawal from normal daily activities. This period, along with the chronic grief that follows, may vary in length and intensity from individual to individual and often resembles clinical depression (Monk et al., 2013).
*Intrusive thoughts: unwanted, involuntary thoughts, images or ideas that can be obsessive, distressing, or upsetting.
When a spouse dies, a third of surviving spouses will experience major depression. This risk of depression peaks during the first six months of bereavement but can last up to two years. Even bereaved persons with minor depression may suffer; they have a greater likelihood of functional impairment, poorer health, more physician visits and mental health counseling, and increased use of antidepressants than do non-bereaved individuals (Monk et al., 2013).
When a person enters a longterm care facility, family interactions and communication are reduced. The loss of in-depth communication, as well as social conversations, can result in the person with dementia feeling socially isolated and without the opportunity to express needs (Moyle et al., 2014).
To address this, family members should be encouraged to participate in a dementia care program, multidisciplinary programs designed to meet the individual needs of residents. The quality and success of a dementia care program is influenced by the environment of a care facility and by the facility’s philosophy of care, services available, and staff experience and training. They usually include support groups for family members, friends, and caregivers.
A dementia care program:
Education, training, and support are badly needed for caregivers, family members, and healthcare providers. The responsibilities of caregiving can be overwhelming, especially for spouses, family members, and friends. A caregiver may be in poor health and have difficulty taking on the burdens of fulltime caregiving. Even trained healthcare providers can find it difficult to deal with demented patients day in and day out.
Caregivers must learn to differentiate dementia from other illnesses and be able to manage difficult behaviors when they arise. They must be able to take a deep breath, slow down, listen, and find effective ways to communicate.
For both professional and family caregivers, training and education can be a big help. It is possible to get better at caring for someone with dementia. Training introduces caregivers to resources, support, and equipment that improve health and safety.
A dementia care program at the University of California at Los Angeles provides caregiver training and social and medical services to families caring for a person with dementia. The UCLA Alzheimer’s and Dementia Care program partners with community-based organizations to provide comprehensive, coordinated, patient-centered care for patients with Alzheimer’s disease and other dementias.
The program had five key components: (1) patient recruitment and a dementia registry, (2) structured needs assessments of patients and their caregivers, (3) individualized dementia care plans based on needs assessments and input from the primary care physician, (4) monitoring and revising care plans, and (5) access 24/7, 365 days a year for assistance and advice (Reuben et al., 2013).
The overall goal of the program is to address lack of support and training for caregivers, improve care transitions, and provide access to community-based services. Physicians report that the program has provided valuable behavioral and social recommendations and nearly all said they would recommend the program for other patients (Tan, Jennings, and Reuben, 2014).
A program in North Dakota called the Dementia Care Services Program uses trained consultants to support individuals who care for people with dementia, offering emotional support, education, and referrals to local agencies. The consultants work with the caregivers to develop a care plan with action steps that address key problems and subsequently check on their progress in following the plan. The consultants speak with the caregivers three times during the first 6 months and remain available for as long as is needed. Participating caregivers report the program has helped them feel more empowered, which in turn has reduced the need for costly medical services and placements in longterm care facilities. The program has generated an estimated $40 million in savings in North Dakota, primarily due to the reductions in the use of longterm care (AHRQ, 2015a).
Dementia care consultant discussing resources with family members. Source: AHRQ, 2015.
A program established at Indiana University’s Healthy Aging Brain Center uses a team-based model to treat patients with dementia and support their caregivers. A multidisciplinary team conducts an initial assessment, holds a family conference to communicate the diagnosis and develop an individualized care plan, and provides ongoing clinic- and telephone-based monitoring, care coordination, and support. The team collaborates with primary care providers to help them better manage their dementia patients’ health problems. The model has improved health outcomes for patients with dementia, including reducing emergency department visits, inpatient use, readmissions, and medication problems, and improving blood sugar and cholesterol control. Collectively, these improvements have generated significant cost savings (AHRQ, 2015b).
Mastery over Dementia is a program that uses Internet-based training to reduce anxiety and depression among family members caring for a person with dementia. Caregivers’ symptoms of depression and anxiety were significantly reduced after participating in the program, compared to a minimal intervention in which caregivers received digital newsletters by e-mail (Blom et al., 2015).