More than 18.5 billion hours of informal care were provided by Alzheimer’s and other dementia caregivers in 2018, a contribution to the nation valued at nearly $234 billion.

In Massachusetts in 2018, 340,000 caregivers provided 387 million hours of care worth $4.89 billion.

Alzheimer’s Association, 2019

A caregiver (care provider, care partner, or carer) is someone who provides assistance to a person in need. Care can be physical, financial, or emotional. Caregivers can help with basic activities of daily living such as bathing, dressing, walking, and cooking, or with more complex tasks such as medication and home management. A caregiver may provide direct care or manage care from a distance and can be a family member, a neighbor, a friend, or a professional; professionals are normally paid and the others are not—and thus are often referred to as “informal.”

Caregiving for those with Alzheimer’s and other related dementias is most beneficial when it is a cooperative venture between primary care and specialist medical providers, community groups, patients, family members, and caregivers—both family and other informal caregivers and those who are paid to provide care to home-dwelling patients or are on the staff of long-term care facilities.

Who Are Caregivers?

In the United States, family members, friends, and other unpaid caregivers supply 83% of the help provided to older adults. Nearly half of all caregivers to older adults provide care for someone with Alzheimer’s or another dementia. About one-third of dementia caregivers are themselves 65 or older. More than 60% are married or in long-term relationships and about 40% have a college degree or more education. About two-thirds live with the person they care for (Alzheimer’s Association, 2019).

Much of the responsibility for caring for someone who has dementia falls to women; about two-thirds of dementia caregivers are women and over one-third are daughters. It is also more common for wives to care for husbands than husbands for wives. Women generally spend more time providing care when they are the caregiver and report somewhat higher levels of burden and psychological effects (Alzheimer’s Association, 2019).

Among paid direct-care workers it is nurse aides, home health aides, and personal and home care aides who provide most of the care to older adults in homes and in residential settings. In nursing homes, the majority of the staff working with cognitively impaired residents are nursing assistants. Most of them are women and they come from a diversity of ethnic, racial, and geographic backgrounds (Alzheimer’s Association, 2019).

Caregiving Tasks

[Material in this section is from Alzheimer’s Association, 2019.]

Caregivers of people with dementia may provide some or all of a wide range of assistance that includes:

• Helping with IADLs
• Medication management
• Aiding adherence to treatment plans
• Helping with ADLs
• Managing behavioral symptoms
• Locating and using support or adult day services
• Arranging for paid assistance, in and outside the home
• Hiring and supervising those providing care
• Additional tasks such as managing the person’s day, intra-family communication, managing other health conditions, or providing companionship, emotional support, and security

While these tasks may look similar to ones provided by caregivers to people without dementia, dementia caregivers tend to provide more executive assistance, more help with health monitoring, self-care, mobility, and health or medical care. More than half of dementia patients receive help with ADLs from informal caregivers while only 11% of older adults without dementia receive the same help (Alzheimer’s Association, 2019).

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 of those with dementia also deal more often with emotional or mental health problems and behavioral issues than do those caring for people without dementia (Alzheimer’s Association, 2019).

If a person with Alzheimer’s or another dementia moves to an assisted living or nursing home family caregiver tasks may segue into an emphasis on emotional support, and working with staff or advocating for care. However, sometimes these caregivers continue to help with ADLs (Alzheimer’s Association, 2019).

Caregiver Training and Support

Education, training, and support are critical 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. 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 has 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).

Results of a further study of the UCLA program that examined healthcare utilization and cost outcomes for the program for Medicare fee-for-service beneficiaries will be fully released in December 2019, but preliminary information indicates: “Comprehensive dementia care may reduce the number of admissions to long-term care facilities, and depending on program costs, may be cost neutral or cost saving. Wider implementation of such programs may help people with dementia stay in their communities” (Jennings et al., 2019).

Supporting Caregivers of Patients with Dementia

Dementia care consultant discussing resources with family members. Source: AHRQ, 2015.

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 long-term care facilities. The program has generated an estimated $40 million in savings in North Dakota, primarily due to the reductions in the use of long-term care (AHRQ, 2015a).

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).

These are just a few examples of programs that have demonstrated benefits. Research continues on a wide variety of programs and interventions that emphasize a holistic management approach and patient-centered or family-centered care that seem to have the most success. However, most researchers note that not everything works equally well in every situation and continued investigation is important.

Causes of Stress for the Caregiver

Caring for a relative or friend who has Alzheimer’s or another dementia can be rewarding but can be very stressful in a variety of ways. While some care tasks are similar to those one might perform for any older person, dementia care carries additional challenges. As dementia progresses the person loses judgment, orientation, and communication skills and their personality and behavior are affected. These losses can be some of the most difficult for family members to deal with. As the disease progresses the person requires more supervision and help, which can increase emotional/social, physical, and employment/financial stress on caregivers.

Caregivers may experience additional stress, depression or other mental health challenges, strain, and stress from care transitions. In a survey done by the National Alliance for Caregiving/American Association of Retired Persons (NAC/AARP) a Burden of Care Index figure combines the number of hours of care and the number of ADL tasks performed into a numerical score that represents burden. Forty-six percent of dementia caregivers were classified as having a high level of burden compared with 38% of those not providing dementia care. Twice as many dementia caregivers indicate substantial emotional, financial, and physical difficulties.

The prevalence of depression is higher among dementia caregivers and the risk increases as the patient’s dementia worsens. Caregivers of spouses had two-and-a-half times higher odds of developing depression than those who care for someone other than a spouse. The more behavioral and psychological symptoms (eg, wandering, agitation, aggression) the patient has, the higher the likelihood of depression in the caregiver, with four symptoms appearing to be the “tipping point.”

The category of strain includes factors such as difficulty accomplishing medical/nursing tasks, lack of experience or training for medical tasks, having felt they had no choice about accepting caregiver responsibilities, and having no help with those responsibilities. Additional stress often surrounds the time at which a decision must be made about putting the person with dementia in residential care and at the end of life. Studies have shown both less stress and more stress in both of these situations.

Caregivers also face challenges to their own physical health as evidence suggests the stress of care can make them more susceptible to disease and health complications and can affect their sleep. Many caregivers report concern about their own health and 35% report that it has worsened due to their care responsibilities. In one poll, 27% reported that they delayed or skipped actions they should have taken to protect their own health. Caregivers may experience physiologic changes indicating increased risk for cardiovascular disease or kidney problems. Caregivers of a spouse appear to have higher risk for a number of other conditions. However, the results of studies have not been consistent and more research is needed.

Dementia caregivers have higher healthcare costs for themselves. Depression is one culprit, plus increasing doctor visits, test and procedures, and costs for medication. The risk of death for caregivers may also be increased—but studies have returned inconsistent findings.

Finally, employment and financial effects are a component of the stress a dementia caregiver may face. Caregivers with outside employment may find themselves needing to take time off or reduce their hours in order to provide care. This in turn can affect their financial situation at a time when many report increasing out-of-pocket expenses (Alzheimer’s Association, 2019).

Managing Caregiver Stress

The Alzheimer’s Association notes that for more than 30 years strategies to help and support family caregivers of those with Alzheimer’s have been developed and evaluated. These interventions (strategies) fall into seven types, each with a particular focus. The types are:

• Case management
• Psychoeducational approaches
• Counseling
• Support groups
• Respite
• Psychotherapeutic approaches
• Multicomponent approaches

The general goal of interventions is to address the negative aspects of caregiving in order to improve the health and well-being of caregivers. Some interventions also work to delay the need to place the person with dementia into a nursing home by giving caregivers additional skills they may need to continue helping their friend or family member as the disease progresses.

Approaches include:

• Providing education to caregivers
• Helping caregivers manage dementia-related symptoms
• Improving social support for caregivers
• Providing caregivers with respite from caregiving responsibilities

A wide-ranging review of interventions has identified characteristics of those that are effective. The three critical elements in these are that family caregivers are actively involved and not just passive receivers of information, the interventions are tailored and flexible to evolve with the changing reality of the situation, and they meet the needs not just of caregivers but of the people they are caring for.

When studies have found interventions to be efficacious they have been implemented in the community and are usually successful, but they still are not reaching a wide area and are not available to all family caregivers. Various methods are being explored for expanding availability, including online training and video-phone delivery options. More research is clearly indicated to understand what interventions are most successful and in what specific situations, how they can be more widely disseminated, and how they can be tailored to serve caregivers in many different situations (Alzheimer’s Association 2019).

Specific Issues for Caregivers

In the Early Stage

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

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

In the late stages, as people lose the ability to speak clearly, family caregivers will struggle to find new ways to communicate using 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% 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% of family caregivers experienced relief when the person with Alzheimer’s disease or another dementia died (Alzheimer’s Association, 2019).

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:

• Need for skilled care
• Family caregivers’ health
• Patient’s dementia-related behaviors
• Need for assistance

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 Grief Process

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:

• Loss of physical strength and abilities
• Increased confusion and changes in mental abilities
• Loss of income and savings
• Changes in housing and personal possessions, including loss of pets
• Loss of self-sufficiency and privacy
• Changes in social roles, loss of friends and social networks

Losses for family members and caregivers include:

• Loss of companionship
• Loss of income
• Loss of privacy and free time
• Changes in routines and social roles
• Little time for hobbies and social activities

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 needs 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 6 months of bereavement but can last up to 2 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).

Family, Residents, and Dementia Care

When a person enters a long-term 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:

• Allows and encourages families to visit at any time
• Plans activities that include family members
• Encourages family involvement in the planning of activities
• Informs family members about changes in their loved one’s condition
• Shares information about resident activities with the family
• Encourages residents to call and write to family members and friends
• Uses technology to keep families in touch with one another