5. Developing Skills for Working with Families and Caregivers

Family caregivers of people living 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

Family caregivers provide the vast majority of care for older adults living with dementia. Healthcare providers must learn how to communicate skills and techniques to sometimes-resistant family members and often-untrained paid caregivers. Differences in education, training, and cultural backgrounds can make this more difficult.

In many cases, the vital caring role of families and their need for support is overlooked. Family caregivers often take on the role of caregiver unexpectedly and struggle to add caregiver duties to busy lives.

Family caregivers are often isolated, lack support, and don’t know much about dementia. They must manage medications and medical care and often have trouble obtaining and sharing information. Over time, prolonged stress can cause frustration, anxiety, depression, and burnout.

Lack of knowledge not only affects the mental health of caregivers but also their caregiving abilities. Dementia education improves care management and encourages caregivers to seek counseling, join discussion forums, and attend support groups (Scerbe et al., 2023).

5.1 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 living 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.

Caregivers of people living with dementia on average provide care for a longer time than caregivers of older adults with other conditions. These caregivers report providing 27 hours more care per month on average than caregivers of people without dementia. 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 living with dementia indicate they have no experience performing medical/nursing tasks (Alz.org, 2023a).

Caring for a person living with dementia also means managing symptoms that caregivers of people with other diseases may not face, such as mental symptoms (for example, anxiety, agitation, apathy, and lack of inhibition) and other behavioral problems. Family caregivers often lack the information or resources necessary to manage the increasingly complicated medication programs for people living with dementia (Alz.org, 2023a).

Because family and unpaid caregivers provide a major societal benefit (often at considerable personal cost), there have been calls for support services that enable continued care in the home. Improving a caregiver’s skills decreases burden and improves quality of life for both the caregiver and the person living with dementia. Caregiver training decreases depression, anxiety, sleep disturbance, hospital stay and mortality and reduces the risk of the patient living away from home (Nichols et al., 2017).

Providing Dementia Care in Florida

In Florida, people who are caring for a person living with dementia provide care for an average of 4 or more years—some for more than 9 years. In Florida, about 870,000 Floridians provide care for someone living with dementia (Alz.org, 2025):

• Most caregivers are unpaid.
• About 2/3 of caregivers have chronic health problems themselves.
• About 1/3 have clinical depression.

5.1.1 In the Early Stage

In the early stage of dementia, family members must manage their own frustrations as they learn about the effects of dementia. They are often unaware of available services and may find their family member’s primary care physician is of little help. Nevertheless, care duties are usually manageable in the early stages of dementia when very little direct care is needed.

Early specialized training is recommended for family caregivers. This is an important but often completely overlooked part of dementia care. Training educates family caregivers about dementia and encourages them to partner with healthcare providers to provide good care.

Spouses who care for a partner living with dementia may not be in good health and may not know how to provide care as the dementia progresses. Likewise, an adult child can struggle with having to take over the care of a parent and assuming a new role in the family.

5.1.2 In the Middle Stages

As the dementia progresses from the mild to moderate stage, caregivers begin to invest more time, energy, and money, leading to high levels of burnout. Depression, poor self-health, stress, and lower levels of life satisfaction can begin to affect the caregiver. Family caregivers in particular are less likely to engage in preventive health behaviors for themselves.

In the middle stages, difficult behaviors may arise that demand complicated decisions about interventions and, perhaps, medications. In addition, family caregivers must often cut back on employment as the demands of caregiving increase.

5.1.3 In the Late Stages

Even with proper training and mentoring, it’s nearly impossible to be a great caregiver all the time. It’s no fun getting up in the middle of the night to clean up after an incontinent family member. It’s almost impossible to be patient when your mom swears at you, screams, hits, bites, collapses during a transfer, or refuses to eat. But the dementia training and resources I found online helped a lot—it gave me strategies and techniques to use when all seemed lost and when nothing was working.

Family Caregiver, Ft. Lauderdale, Florida

Caring for a person living with severe dementia means caregivers are involved with every aspect of a person’s care. During the final year, a family caregiver may be on duty throughout the day and night. Many family caregivers admit they experience relief when the person they are caring for dies.

A person living with severe dementia may no longer be able to communicate their needs clearly. This can be frustrating for caregivers, who will struggle to understand the person’s needs. Caregivers must learn to interpret facial expressions for sadness, anger, or frustration, and physical gestures such as grasping at undergarments, which can communicate the need to use the bathroom.

One of the most difficult issues facing a family caregiver—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

Turning over full-time care can cause feelings of loss, sadness, resignation, and depression for family caregivers. Unfortunately, moving to a care facility may not reduce the stress that a caregiver experiences.

If the person living with dementia moves to a care facility, family caregivers must learn 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 difficulties.

5.2 Grief and Loss

I’m ashamed to say that, before I began taking care of my mother, I had very little understanding of the grief experienced by family members caring for someone living 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

Receiving a diagnosis of dementia can cause concern and grief for everyone involved. For the person living with dementia, grief is related to changes in social roles, loss of friends, and the breakdown of social networks. There is real concern about loss of income and savings, loss of self-sufficiency and privacy, potential changes in housing and personal possessions, and loss of pets. Grief can also cause physical symptoms such as shortness of breath, headaches, fatigue, a feeling of heaviness, and a lack of energy.

For family caregivers, grief is associated with:

• loss of companionship as a person’s dementia progresses
• reduced income due to caregiving responsibilities
• loss of privacy and free time
• changes in routines and social roles
• loss of time for hobbies and social activities

Moving to a nursing home can cause both grief and relief for family caregivers. Nursing homes and assisted living facilities are chronically understaffed, 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 living with dementia as well as family members and friends.

Spouses often experience different grieving patterns than other family caregivers. Grief can get worse at key times such as the point of diagnosis, transition to a care facility, facing the end of life, and physical death (Rupp et al., 2023).

5.2.1 Five Key Dimensions of Grief

Grief can be associated with any form of loss, including loss of employment, changes in relationships, significant life changes, loss of health, and loss of the future that was hoped for and imagined. This can include (Waddington et al., 2023):

• Grieving for the person I used to be.
• Concern for how others see me.
• Grieving the person I will become.
• Grieving for those who have died.
• Not knowing what helps me with my grief.

One of the most common grief frameworks is the “five stages of grieving” traced to Kübler-Ross’s (1969) book, On Death and Dying. The fundamental premise is that a dying individual goes through five stages: denial, anger, bargaining, depression, and acceptance. Kübler-Ross later included anticipatory grief related to the client’s family (Avis et al., 2021).

5.2.2 Anticipatory Grief

Anticipatory grief is the experience of grief before an actual loss has occurred. It is associated with severe depression and anxiety and is common among clients living with dementia, as well as their caregivers. Anticipatory grief can be an unrecognized but significant psychological burden (Wang et al., 2026).

Nearly half of clients living with a chronic illness experience anticipatory grief due to fear and uncertainty, which can significantly affect a person’s quality of life. Anticipatory grief can impact health outcomes, reduce survival rates, and increase the risk of adverse events (Wang et al., 2026).

Caregivers also experience anticipatory grief due to the physical and mental burden associated with caregiving and uncertainty about the progress of the disease. This is common in informal caregivers, including spouses and family members. As caregiver stress increases, anticipatory grief can also increase, causing anxiety and depression in informal caregivers (Wang et al., 2026).

5.2.3 Physical and Psychological Symptoms of Grief

Grief can cause physical symptoms such as shortness of breath, headaches, fatigue, a feeling of heaviness, and a loss of physical strength and abilities. It can also cause psychological symptoms such as clinical depression, hypochondria, anxiety, insomnia, and the inability to get pleasure from normal daily activities.

The onset of dementia can affect other aspects of a person’s life, including loss of income and savings, and loss of health insurance. There may be changes in housing and personal possessions, loss of pets, and loss of self-sufficiency, privacy, and self-esteem.

5.2.4 Caregiver Grief

Caregivers of persons living with dementia experience intense feelings of grief and loss prior to the physical death of the person they are caring for. The impact of these losses can build as the disease progresses. Cognitive decline, memory loss, changes in personality, and lost and forgotten family history increase caregiver grief. A caregiver’s grieving can lead to feelings of ambiguity, disenfranchised grief,* loss of companionship, as well as anger and guilt (Rupp et al., 2023).

*Disenfranchised grief: a type of grief that occurs when a person's loss is not recognized, validated, or openly acknowledged by society.

Worries about potential future losses can be a cause of grief. Loss of independence, loss of a driver’s license, loss of communication and navigation skills, concerns about changes in personality and behavior, and fear of dying contribute to grief. There can be a general sense of the loss of the life a person had hoped for and imagined that they were no longer able to live (Waddington et al., 2023).

5.2.5 Loss of Friends and Family Members

About two years before my mom died, I received a phone call from a cousin saying that my mom’s sister had died. I hung up the phone and, not knowing how my mom would react, gently told her that her sister had died. There was a flash of recognition and grief on her face that quickly faded, and I think she almost immediately forgot what I told her. It was harder for me seeing her inability to process her sister’s death than it seemed to be for her.

Family Caregiver, Lauderdale Lakes, FL

Bereavement-related grief is related to the death of family members, friends, and neighbors, and opinions differ on whether to inform people living with dementia of a death. Some caregivers feel that everyone had a right to be informed; others feel that telling people living with dementia can lead to unnecessary distress (Waddington et al., 2023).

Concerns about informing a person living with dementia multiple times about a death and its ongoing impact is sometimes referred to as “re-bereavement” grief. There are different views on how and who is best placed to inform, and how to best support the person living with dementia following the death of someone to whom they may have been close (Waddington et al., 2023).

5.3 Strategies for Encouraging Family Involvement

Encouraging family members to be involved in the care of a family member can be challenging for healthcare providers. Training, education, and support are critical. Training introduces caregivers to resources and equipment that can improve health and safety and reduce caregiver strain.

The duties associated with caring for a family member living with dementia usually develop slowly, requiring more time, knowledge, and skills over time. Encouraging family members to attend a support group or dementia care program early in the caregiving journey is strongly recommended.

In addition to in-person training and support, caregivers can benefit from personalized, user-friendly online programs. Well-designed programs connect caregivers with a social network, allowing them to share ideas and practical concerns.

The system of unpaid family care is under intense pressure due to declining fertility rates and fewer young people willing to care for older adults. Many family members do not live near their older adult relatives.

Most family caregivers are women, and many are caring for children, working, and managing a household at the same time they are caring for a family member. In this situation, many caregivers cut back on work, which affects their finances. Hiring a caregiver is costly and may not significantly reduce the strain on family members.

Family caregivers often defer to medical professionals even though they know quite a lot about the needs of the person for whom they are caring. Healthcare providers often do not see family caregivers as partners in care. Family caregivers may not know what questions to ask or how to respond to the information they receive.