Caregiving is the provision of extraordinary care, exceeding the bounds of what is normal or usual in family relationships. It typically involves a significant expenditure of time, energy, and money over potentially long periods of time; it involves tasks that may be unpleasant and uncomfortable and are psychologically stressful and physically exhausting.

Richard Schulz and Lynn Martire

A caregiver is someone who assists a person in physical, financial, or emotional need. Caregivers help with basic activities of daily living such as bathing, dressing, walking, and cooking, and with more complex tasks such as medication, financial, 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 healthcare professional.

Much has been written about the negative effects that caregiving can have on the physical and mental health of caregivers, especially when they lack the necessary education, information, resources, and support (ADI, 2022). This is a critically important societal issue because each year more than 11 million family members and friends provide over 18 billion hours of unpaid care to those with Alzheimer's and other dementias, a contribution valued at nearly $340 billion (Alzheimer’s Association, 2023).

7.1 Causes of Stress for the Caregiver

Oh, what to say about caring for a family member with dementia? The stress is real and kind of creeps up on you. It’s not too hard at first—you know—when my mom still had a good appetite, could walk around the house, take care of her garden, answer the phone, and listen to books on tape. Near the end, things got really difficult—lack of sleep, family squabbles, having to directly help with everything—and she wouldn’t eat! There were more medical appointments and a very disinterested and unhelpful doctor made things much worse. I’m convinced I had a mild heart attack during this time, but I didn’t go to the doctor because there was no one to watch her while I was gone.

Family Caregiver, West Palm Beach, FL

The responsibilities of caregiving for a person with dementia can be overwhelming. Nearly 60% of Alzheimer's and dementia caregivers rate the emotional stress of caregiving as high or very high. About 40% of caregivers report symptoms of depression. One in five cut back on their own doctor visits because of their care responsibilities. And, among caregivers, 3 out of 4 report they are “somewhat” to “very” concerned about maintaining their own health since becoming a caregiver (Alzheimer’s Association, 2023).

Caring for individuals with dementia is more stressful than caregiving for individuals with many other diseases. This is because dementia caregiving is characterized by specific problems such as the lack of free time, isolation from others, behavioral problems and personality changes, and fewer positive experiences resulting from the lack of expressed gratitude by the care recipient (Elnasseh et al., 2016).

Providing care places practical, psychological, and emotional stress on caregivers. Caregivers who become overwhelmed by the demands of caring for someone with dementia can experience irritability, anxiety, and sleep disturbances. Many studies have documented a higher prevalence of depressive symptoms among caregivers, with the highest prevalence among those caring for someone with dementia (ADI, 2013).

The economic impact of caregiving is an additional stressor. In a study conducted by the Organization for Economic Co-operation and Development (OECD) of caregivers of older people (not dementia caregivers specifically), a 1% increase in hours of care was associated with a reduction in the employment rate of caregivers by around 10% (ADI, 2013).

A survey of American caregivers conducted by the Alzheimer’s Association indicated that 13% had to go from working full- to part-time, 11% had to take a less demanding job, and 11% had to give up work entirely. Cutting back or giving up on work was associated with higher caregiver strain, while strain was reduced by hiring a paid caregiver, or having additional informal support (ADI, 2013).

Family dynamics are an important part of the caregiving experience. Communication, adaptability, flexibility, and marital cohesion are connected to the well-being of caregivers. Depression and anxiety are more likely to occur among caregivers in families with poor functioning, and conflicted family dynamics can intensify caregiver depression and caregiver strain. The poor functioning of families can result in a decrease in the time spent on patient care, potentially impacting the quality of care the individual with dementia receives (Elnasseh et al., 2016).

Conversely, healthier family dynamics and good family support are associated with lower levels of caregiver strain. When families increase their support to primary caregivers, it often results in helping the individual with dementia. Caregivers experience less burden and depression when family cohesion is high; also, greater family communication plays an important role in reducing caregiver burden (Elnasseh et al., 2016).

Whether paid or unpaid, most caregivers across most cultures are women. Unfortunately, many women may be relatively disadvantaged with respect to education, career opportunities, income, assets and (in older age) pension entitlements. Taking on caring responsibilities for a person with dementia can lead to social isolation, cutting back or stopping work, and risks to physical and mental health (ADI, 2015, latest available).

7.2 Challenges for Caregivers at Each Stage

I’ve been hired to help care for a woman with mild dementia. She has five kids who come to their mother to discuss their personal problems. When they talk about their problems, I notice the mom always agrees with them but when they leave, she turns around and says, “I can’t stand to hear all their complaints.”

She gets really agitated after they visit. Sometimes she sits and cries for the rest of the day and I can’t snap her out of it. She didn’t used to be like this. I get so tired it almost isn’t worth it–I never get any sleep when I’m there. I finally had to cut back from 7 to 4 days. It was really difficult caring for this woman.

Professional Caregiver, Miami, Florida

The onset of caring tends to emerge naturally from the customary family transactions that existed before the onset of dementia. Needs for care tend to increase over time, from increased support for household, financial, and social activities, to personal care, to what—for some—is almost constant supervision and surveillance. Important transitions include the involvement of professional caregivers, institutionalization, and bereavement (ADI, 2013, latest available).

In the early stage of dementia, family caregivers may not know much about dementia and may not seek help. They may be confused and frustrated when their family member “acts funny.” During this time, caregiving responsibilities and duties can usually be handled by family members.

A person with mild dementia may only need help with complex activities such as banking, bill paying, medical appointments, and medications. They may still live alone, drive, and even have a job. They can usually handle activities of daily living such as bathing, eating, and cooking.

In the moderate stage, the increased time needed to care for a previously independent person often increases caregiver anxiety and stress. Loss of free time, work conflicts, and family issues may seem impossible to resolve. Often the responsibility of caregiving falls mostly on one person—generally a woman—leading to anger and frustration with other family members.

In the later stages of dementia, when fulltime care is needed, family members face difficult decisions and primary caregivers can become overburdened. Should the person with dementia move in with a family member? Should a full-time caregiver be hired? Should their loved one be admitted to a long-term care facility?

I’m exhausted. I can’t sleep because I have to watch out for my wife. She wanders around the house, takes out all kinds of stuff from the kitchen. I never know what she’s going to do.

Family Caregiver, West Palm Beach, Florida, 2024

Challenging behaviors that can arise in a person in the later stage of dementia, such as agitation, irritability, obscene language, tantrums, and yelling can be embarrassing, tiring, and frustrating for caregivers. Caregivers may be injured if a person throws things, strikes out, or bites. Caregivers may react out of fear and strike back or yell to stop these behaviors, creating guilt and more frustration.

In this stage, safety is a challenge for caregivers. Spouses and family members become exhausted tending to a person who needs constant supervision. Jobs, hobbies, friendships, travel, and exercise fall to the side. Caregivers often neglect their own health, causing more stress.

Family members may find it impossible to continue to provide care at home and may decide to move their loved one to an assisted living or skilled nursing facility. Although this can reduce caregiver burden, it does not relieve spouses and family members of the stress of continuing to worry about and manage care for their loved one.

7.3 Strategies for Managing Caregiver Stress

Reducing caregiver strain is possible when the caregiver receives education, training, support, and respite. These four components have been shown to decrease caregiver stress and reduce or delay the transition from home to a care facility (ADI, 2022).

Caregivers can also reduce their stress by paying attention to their own health. This means getting enough sleep, eating properly, seeing their own doctors, and sharing their feelings about their caregiving duties with co-workers, family, and friends.

Adult daycare centers offer respite and support services, provide relief for family caregivers, reduce caregiver burden, and increase caregiver motivation. A primary goal is to develop knowledge and skills in dementia care and prevent early institutional placement.

Adult daycare centers (Tretteteig et al., 2017):

• Provide separation time, giving family caregivers time that can be used for undisturbed work, rest, or other pursuits.
• Reduce behavioral problems and the need for assistance with ADLs.
• Reduce care demands, stress, and depression as well as increase wellbeing.
• Increase motivation for care and postponement of residential placement.

7.4 Caregiver Bill of Rights

A caregiver bill of rights was first crafted by Jo Horne in her 1985 book CareGiving: Helping an Aging Loved One. Her widely adopted principles, although not legally binding, have provided a framework for additional research on the critically important role that informal, unpaid caregivers play in the care of dependent older adults.

The original caregiver bill of rights contains nine items that encourage caregivers to consider their own health and well-being and to set boundaries. Among other things, the Caregiver Bill of Rights states, “I have the right to”:

1. Take care of myself.
2. Seek help from others.
3. Maintain facets of my life that do not include the person I care for.
4. Get angry or depressed.
5. Resist attempts by the person I am caring for to manipulate me.
6. Receive consideration, affection, forgiveness, and acceptance from the person I am caring for.
7. Take pride in what I am doing.
8. Protect my individuality.
9. Demand resources to support and aid caregivers.

For a comprehensive list of these rights, please click here.