All over the world, the family is the cornerstone of care for older people who have lost the capacity for independent living. In Florida, more than 800,000 unpaid caregivers provide care valued at more than $23 billion each year (Alzheimer’s Association, 2023, March 14).
About two-thirds of people with dementia live in the community, and for most of these individuals, care is provided by family, friends, or other unpaid caregivers. Nationwide, approximately 16 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, about two-thirds 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, 2023, March 14).
Did You Know . . .
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 (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 cognitive, functional, or behavioral problems (Alzheimer’s Association, 2023, March 14).
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 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).
For a person with dementia, caregivers 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, 2023, March 14).
Caring for a person with dementia 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, 2023, March 14).
Family caregivers often serve as proxy decision makers when a person with dementia is no longer able to contribute to care conversations. However, they may feel ill prepared and experience decision-making as challenging. This uncertainty can impact a caregivers’ wellbeing and can affect the comfort of a person with advanced dementia. Helping family caregivers understand the values and preferences of the person with dementia and viewing dementia as a life-limiting condition can be helpful in addressing these issues (Bavelaar et al., 2023).
Family Issues 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 try to learn about dementia. They are often unaware of available dementia-care services and may find primary care physicians are of little help.
In this early stage, family caregivers will notice some loss of free time and some financial strain. The person experiencing cognitive changes is often aware of what they are losing, causing frustration, denial, and difficulty adapting to lifestyle changes. At this stage, periodic confusion and perceptual changes may mean the loss of a driver’s license, which represents a loss of independence. Family members and spouses are more alert to safety issues, leading to a loss of privacy. Having to rely on another person for shopping, cooking, and finances means a loss of normal activities and a “normal” life.
If a spouse-caregiver is not be in good health, he or she may worry about not being able to provide good care as the disease progresses. An adult child caregiver may worry 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 often not needed, and caregivers can often leave their family member alone for periods of time.
To counteract these early difficulties, specialized training is strongly 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.
Family Issues in the Middle Stages
In the middle stages, behavioral and psychological problems may arise, requiring decisions about behavioral interventions and, perhaps, medications. Family caregivers often 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, placing strain on their own lives and finances. Managing an additional household and the increased physical demands of assisting with transfers and other activities of daily living can increase stress. Medical care becomes more complicated, healthcare providers may provide little guidance, and care feel there is often no one to turn to for help.
Personal losses continue to accumulate for the person with dementia and for caregivers. Loss of independence becomes more severe for everyone. For the person with dementia, decisions are much more difficult and personal care often requires direct help, affecting a person’s dignity. Loss of privacy, loss of independence, difficulties with mobility means the person with dementia loses the ability to live with any sort of independence.
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. Consequently, they can be at risk for serious illness, increased emergency department use, and hospitalization (Lykens et al., 2014).
Family caregivers’ cumulative stress is also associated with increased nursing home placement, institutionalization, and hospitalization of the person with dementia. Caring for someone with dementia can undermine the health and well-being of both the patient and the caregiver (Lykens et al., 2014).
Family Issues in the Late Stages
In the late stages, communicating with, and understanding what others are saying is severely affected. People with dementia lose the ability to make their needs clearly known. Specialized training makes helps caregivers immensely at this stage. Caregivers must learn to interpret facial expressions for sadness, anger, or frustration, as well as physical gestures such as grasping at undergarments, which may communicate the need to use the bathroom.
In the later stage, independence, privacy, and self-determination are almost completely lost. Daily care, meals, entertainment, exercise, and schedules are under the complete control of care providers. Caregivers, whether family or professional, must schedule their activities around the needs of the person they are caring for.
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
For family caregivers, relinquishing full-time care can cause feelings of loss, sadness, resignation, and depression. Although a family member might believe the care in a facility is better and more skilled than the care the person receives at home, this is often not the case. 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.
Family Issues at the End of Life
The demands of caregiving intensify as people with dementia approach the end of life. In the year before the person’s death, more than half of caregivers feel they are “on duty” 24 hours a day. Many report that 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).
Caring towards the end of life can be particularly challenging as medical symptoms and complications increase and the person becomes less responsive and able to communicate. Caregivers have reported a gap in support services for the challenges they face towards the end of life, such as caring at home and navigating complex care systems. The strain on health and social care services worldwide has resulted in a shift from formal care services providing care, to caregivers providing more care for longer at home (Davies et al., 2019).
My dad died in 2007. My mom, Lucia had been experiencing very mild dementia for several years and my dad took care of most everything. When he died, me, my 3 sisters, a niece, and a nephew jumped in to help. We made a schedule, cooked, cleaned, and took care of medical care and finances. This worked pretty well for several years until my mom lost the ability to be home alone for any length of time. She was diagnosed with macular degeneration and started needing help with meal preparation, TV, and even the telephone.
Three of us, plus my nephew started staying overnight. One sister refused to stay over but helped during the day. As my mom’s dementia progressed, she started getting argumentative and nasty at times. She locked my nephew out of the house, saying he was bossing her around. He stopped helping soon after.
As things progressed, my mom had trouble making decisions and her answer to anything involving money or home improvement was “no!” She absolutely refused to have any sort of hired help—not even a housecleaner.
Another year passed and my mom’s dementia worsened. My niece hung in but eventually got a full-time job and had to quit helping us. We were down to the 4 sisters—one of whom refused to stay overnight and sometimes didn’t show up for her shift.
By this time, my mom was almost completely blind. She was able to walk around the house, dress herself, and do most activities of daily living by herself. She still enjoyed car rides, books on tape, and TV.
Over time, as her dementia progressed, she started losing some of her independence in daily tasks such as dressing and showering. To relieve some of our caregiving duties, we finally were able to hire a caregiver. This helped a little but unfortunately, the sister in charge of my mom’s money refused to pay for overnight help. We limped along like this for a couple of years until one sister quit and the other moved to Arizona. That left the 2 of us and a couple of caregivers to cover our mom’s needs 24/7.
My sister cut back to 3 days at work, and I neglected my business. We split the time between the 2 of us with caregivers filling in when we weren’t there.
The thing that really increased caregiving duties was when my mom could no longer safely walk by herself. That meant we had to help her every time she got up. We had to stay close by, listening carefully, and get up multiple times at night to help her to the bathroom.
During the last couple of years, we were busy from dawn to dusk—shopping, cooking, cleaning, helping her exercise, managing caregivers, taking her to medical appointments, and entertaining her. The last year was the hardest. Unfortunately, her doctor pretty much checked out well before my mom died. If it weren’t for my sister’s and my knowledge of the healthcare system, we would have been sunk.
My sister and I were good caregivers, but the caring last for almost 20 years. My mom died peacefully in her sleep and we’re still recovering 5 years later.
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. Supportive interventions to address grief should 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
- 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
There may be a great deal of grief when a person with dementia moves 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 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 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).
Dementia Care Programs
Entering a long-term care facility is often a difficult and feared transition for an older adult. Loss of social status, stigma, isolation, and reduced contact with friends and family members can have a profound effect—especially for a person with cognitive challenges. Having to adapt to the facility’s routine, loss of privacy, and unfamiliar surroundings can leave a person feeling isolated and depressed.
To address this, friends and family members are 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.
- Supports dementia-friendly activities.
Caregiver Training and Support
Education, training, and support are badly needed for caregivers, family members, and healthcare providers. The responsibilities of caregiving can be overwhelming, especially for spouses and family members. 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 day-in and day-out to deal with patients (or family members) experiencing dementia.
Dementia care consultant discussing resources with family members. Source: AHRQ, 2015. Public domain.
In addition to dementia-specific education, caregivers must learn to differentiate dementia from other illnesses. This is a critical skill that allows a direct-care staff and family members to advocate for their loved one in a complicated healthcare system. Caregivers also must learn to manage difficult behaviors when they arise. This involves slowing down, listening, and finding effective ways to communicate.
With effective, dementia-based training, it is possible to get better at caring for someone with dementia. Training provides access to resources, support, and equipment that improve health and safety.
In Florida, a program funded by a grant from the National Institute on Aging provides a comprehensive listing of resources and educational materials available to caregivers. Dementia Care Central (www.dementiacarecentral.com) lists an array links and services including how to hire and pay for care, understanding Medicare benefits, in-home technology, dealing with difficult behaviors, respite services, as well as information about adult day care, assisted living, and nursing homes. In addition, Dementia Care Central provides support services for caregivers that include:
- Case management
- Specialized medical equipment and supplies
- Caregiver counseling and support groups
- Caregiver training
These services are provided through the 11 Area Agencies on Aging (AAA’s). For eligibility requirements and how to receive these services, you can contact your local Area Agency on Aging by calling the Elder Helpline at 1-800-96-Elder (1-800-963-5337).