Family caregivers of people with dementia are often called the invisible second patients. The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship.
Henry Brodaty and Marika Donkin,
Prince of Wales Hospital, Sydney, Australia
All over the world, the family is the cornerstone of care for older people who have lost the capacity for independent living. More than 80% of the care provided to older adults in the United States is provided by family, friends, or other unpaid caregivers. People with dementia who live in the community are more likely than older adults without dementia to rely on multiple unpaid caregivers (often family) (Alzheimer’s Association, 2019).
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).
Working with family members and caregivers caring for a person with dementia takes a great deal of understanding, training, and patience on the part of a healthcare provider. Not only must a healthcare provider learn skills for working with a person with dementia he or she must learn how to communicate these skills and techniques to sometimes resistant family members and often untrained hired caregivers. Differences in education, training, and cultural backgrounds can compound the difficulties.
At the time of diagnosis with Alzheimer’s disease or other forms of dementia, the family caregiver is faced with new challenges in identifying as a caregiver, developing self-confidence in this role, including the mastery of specific skills to manage the new situations, knowledge about relevant services, and connecting with an informal support network (White et al., 2018).
Recognizing Concerns and Issues of Family Members
For me, taking care of my own health and well-being took a nosedive as my mom’s dementia got worse. As my sister and I neared the end of our mom’s life, we were drained emotionally and financially, hobbies and vacations were a distant memory, friends had been neglected, and some family relationships were damaged beyond repair. Until we have a national program to provide training, oversight, and money for caregivers, I don’t see things changing very much.
Family Caregiver, Palm Beach, Florida
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). For family caregivers, good care can break down quickly if caregivers fail to get enough sleep, do not take care of their own medical needs, or do not access support and training.
Not surprisingly, 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 dementia indicate they have no experience performing medical/nursing tasks (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 (for example, anxiety, apathy and lack of inhibition) 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, 2019).
Because family and unpaid caregivers provide major societal benefit at minimal cost to the healthcare system, often at considerable personal cost, there have been repeated calls for support services that enable continued provision of care in the home. Interventions that enhance caregiver coping skills and management of difficult behaviors have been shown to decrease caregiver burden and improve caregiving skills and quality of life for both caregiver and person with dementia. Caregiver behavioral interventions have been shown to decrease physical and psychological consequences such as depression, anxiety, sleep disturbance, hospitalization and mortality, and increased risk of patient institutionalization (Nichols et al., 2017).
A survey of more than 1,000 caregivers in Florida who are caring for a person with dementia had these key findings:
- More than half of caregivers have been providing care for four or more years, and nearly 17% have been providing care for nine years or more;
- The average caregiver provides 78 hours of care per week; 23% provide around-the-clock care;
- About a quarter of caregivers work full-time and 10% work part-time; 94% of caregivers are not paid for the assistance they provide;
- About a third of caregivers have a health problem, physical condition, or disability that affects the type or amount of care that they can provide, while more than half are experiencing stress or mental health problems that affect the type or amount of care they can provide;
- About 41% of caregivers do not have any plans for how to secure their loved one with ADRD in the event of a disaster; and 59% report that respite is the most needed service to continue providing care, especially for those who wish to continue working in their careers without interruptions.
FL Department of Elder Affairs, 2016
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 the effects of 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 may not be needed and caregivers can often leave their family member alone for periods of time.
Early, specialized training is recommended for informal caregivers. This is an essential but often completely neglected component of dementia care. Training prepares family caregivers for what lies ahead and allows 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 may arise, requiring complicated decisions about behavioral interventions and, perhaps, medications. Family caregivers often must 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 communicate clearly, family caregivers will struggle to find new ways to understand 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% of caregivers feel they were “on duty” 24 hours a day, and many report caregiving during this time is 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. Reasons cited by caregivers for placement are:
- Need for skilled care and assistance
- Family caregivers’ health
- Patient’s dementia-related behaviors
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
I’m ashamed to say that before I began taking care of my mother, I had very little understanding of the pressure and grief experienced by family members caring for someone with dementia. I only offered platitudes such as “make sure you walk with your wife every day”—this when the husband was slumped at the kitchen table, clearly overwhelmed and severely depressed. I just didn’t see it. Now I do.
Home Health Physical Therapist, Tampa, Florida
The diagnosis of dementia difficult for the person receiving a diagnosis of dementia as well as family and friends. There is concern related to uncertainty about the course of the disease and anticipated loss of independence. Grief can manifest in physical symptoms such as shortness of breath, headaches, fatigue, a feeling of heaviness, and a lack of energy. Psychological symptoms such as depression, anxiety, insomnia, and loss of interest in normal hobbies and activities will almost certainly develop. These issues can lead to self-destructive behaviors, such as alcohol or drug abuse. Supportive interventions to address grief and loss include counseling, assessment of co-morbid conditions, education and training, and development of a care plan.
Losses for the person experiencing dementia include:
- Loss of physical strength and abilities
- Changes in mental abilities and increased confusion
- 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
- Loss of time for hobbies and social activities
There may be a great deal of grief when a person with dementia is moved to a care home. Nursing homes and assisted living facilities lack privacy, usually don’t allow pets, and truly represent the last stage of a person’s life. This can cause grief and depression for the person with dementia as well as family members and friends.
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).