Family is the cornerstone of care for older adults who have lost the capacity for independent living. In many developed countries, the vital caring role of families and their need for support is often overlooked. In developing countries, the reliability and availability of the family care is often overestimated. Family caregivers are often cast into the role of caregiver unexpectedly and are largely unpaid.

Alzheimer’s Disease International

Family caregivers consistently report a lack of support, insufficient dementia knowledge, and barriers obtaining and sharing information. They report feeling isolated and experience feelings of frustration, anxiety, depression, burnout, and prolonged stress (Scerbe et al., 2023).

For healthcare providers, understanding these issues is important when working with family members and caregivers. And it isn’t only family members who lack dementia education. Healthcare providers also often lack dementia-specific education, training, and experience. Developing skills for working with family members and caregivers means listening to and recognizing their issues, fears, and concerns. It means learning how to communicate skills and techniques to sometimes-resistant family members and often-untrained paid caregivers.

6.1 Recognizing Issues and Concerns of Family Caregivers

Taking care of my own health took a nosedive as my mom’s dementia got worse. Near the end of her life, I was drained emotionally and financially. Hobbies, free time, and vacations were a distant memory, and family relationships were damaged beyond repair. Hospice helped a little but not as much as I’d hoped it would.

Family Caregiver, Palm Beach, Florida

Family caregivers face unique challenges that differ from those of professional caregivers. Long held habits, beliefs, roles, and expectations can hurt or help familial relationships. The role of caregiver may fall on a spouse or adult children that have their own health concerns. Caregivers may live a long distance away, work fulltime, or be financially strained.

Approximately 85% of Americans living with dementia reside with family, friends, or in assisted living facilities, while 15% live in nursing facilities. In the last year of life, family caregivers of someone living with dementia are three times more likely to experience caregiver burden compared to caregivers of people dying from other diseases (Bigger et al., 2024).

The person living with dementia and their caregivers are at higher risk for poor outcomes related to care transitions* than people without dementia. Despite the need for flexible, tailored, and equitable services, care systems are often fragmented and difficult to navigate (Bigger et al., 2024).

*Care transitions: movement between healthcare services or locations of care.

6.1.1 Issues and Concerns in the Early Stage

In the early stage of dementia, family members are confronted with many issues, worries, and concerns as they adjust their own behavior and manage their own frustrations. They are often unaware of dementia-care services and may find their primary care physician to be of little help.

Spouses who care for a person living with dementia may not be in good health themselves and may worry about not being able to provide good care as the dementia progresses. Adult children may worry about having to take over the care of a parent and assume a new role in the family.

Early, specialized training is recommended—when care duties are lighter than they will be in later stages. This is an essential but often neglected part 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.

6.1.2 Issues and Concerns in the Middle Stages

A diagnosis of dementia usually doesn’t occur until the middle stage. This means family caregivers are playing catch-up, just beginning to learn about communication techniques, assistive equipment, and dementia-care services. At this stage, the person living with the effects of dementia, as well as family caregivers have already experienced significant changes in their lives.

For healthcare providers, listening carefully to family concerns, encouraging participation in decision-making, and recommending a support group (even online) can help caregivers feel competent and valued.

In the middle stages, behavioral and psychological problems can arise, requiring complicated decisions about interventions and, perhaps, medications. Family caregivers often cut back on employment as caregiving demands increase.

During the middle stage, caregivers begin to invest more time, energy, and money. The increased time needed to care for a previously independent person can cause caregiver anxiety, depression, stress, and burnout. Caregiving duties often fall mostly on one person, which can lead to anger and frustration with other family members.

6.1.3 Issues and Concerns in the Late Stages

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, Miami, FL

In the late stage of dementia, continuing to live at home or in assisted living may no longer be an option. One of the most difficult issues—usually in the middle to late stages of dementia—is the decision to transfer a family member to residential care or skilled nursing. Reasons cited by caregivers for placement are:

• Need for skilled care and assistance.
• Family caregivers’ health.
• Client’s dementia-related behaviors.

Healthcare providers can be a valuable source of support, providing information about respite care, long-term care options, and hospice. Counseling and support groups allow caregivers to discuss any guilt they may be feeling and learn from other caregivers about how to navigate the medical system.

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 not lessen the stress that a caregiver experiences.

6.1.4 End of Life Issues and Concerns

The demands of caregiving intensify as the person living with dementia approaches the end of their life. In the year before the person’s death, more than half of caregivers feel they are constantly on duty, and many report caregiving during this time is extremely stressful. It is not uncommon for a caregiver to feel relief when the person they are caring for dies.

Caregiver well‐being is influenced by the availability of family support, family functioning, conflict, and feelings of isolation, all of which are linked to increased depression, distress, and burden. The emotional toll of caregiving is often harder for female caregivers who often take on greater responsibilities and spend more time caregiving than their male counterparts, especially during end-of-life care (Iacob et al., 2025).

Interventions, such as educational programs, can reduce caregiver burden. Family dynamics also play a crucial role in caregiver stress. Supportive families can reduce caregiver burden, while dysfunctional family dynamics increase caregiver stress. Encouraging family members to participate in therapy, support groups, and respite programs, can reduce caregiver distress. Living with the care recipient can enhance caregiving but can also increase stress due to the constant demands of care (Iacob et al., 2025).

6.1.5 Hospice Issues and Concerns

Individuals living with dementia are the fastest growing population of patients entering hospice care in the United States. Dementia is now the leading principal diagnosis among patients enrolling in Medicare hospice services. Behavioral and psychological symptoms of dementia increase the complexity of end-of-life care. (Sadowska et al., 2024).

The decision to pursue hospice care means considering life issues, adapting to new healthcare services, and coping with a shift in goals of care from cure to comfort. However, hospice services are associated with improved symptom management, increased caregiver satisfaction, and decreased caregiver burden (Bigger et al., 2024).

Unfortunately, some hospice professionals lack dementia-specific training, and best practices are lacking. Because of this, healthcare providers may not be well-equipped to meet the needs of a person living with dementia and their caregivers. This can lead to disrupted care, burdensome transitions, financial strain, and increased stress and anxiety. These poor outcomes are especially high among Black and Latino people living with dementia (Lassell et al., 2022).

As a person nears the end of their life, they often have to rely on another person for decision-making. Proxy decision-makers* must ensure that decisions are consistent with the long-term values and beliefs of the person they are caring for. It is also important to ensure that a client’s decisions are made voluntarily and without the influence of others who may try to take advantage of a vulnerable person for their own benefit (Bucko et al., 2025).

*Proxy decision-maker: a person legally designated to make decisions for someone unable, or no longer able to make decision for themselves.

Although most people receive hospice services in their home, they are more likely to die in a long-term care facility than those with any other diagnosis. A person’s desire to avoid burdening their families is the main reason they choose to receive end-of-life care outside of the home (Yin et al., 2024).

6.2 Strategies for Encouraging Family Involvement

Despite their willingness to remain actively involved, family members often take a step back when their relative is enrolled in hospice. This can be because healthcare providers don’t see caregivers as partners in care or due to a lack of consistent contact between family and staff. The top-down nature of healthcare services can be intimidating for family caregivers.

These issues are important for healthcare providers to keep in mind. Family involvement increases the well-being of the person living with dementia by making them feel they are receiving good care and are not being abandoned. It also increases family caregivers’ satisfaction with dementia care (Tasseron-Dries et al., 2023).

Strategies to increase family involvement in hospice care include:

• Encouraging them to choose and participate in activities.
• Helping them learn about and understand the challenges associated with end-of-life care.
• Helping to arrange transportation if the family member is receiving hospice services outside the home.
• Including them in team meetings.
• Emphasizing their role as a partner in care.

Advanced care planning should be discussed and encouraged as early as possible. Healthcare providers play a key role in guiding families through this process, providing resources and support. Family members may resist advanced care planning because of stigma, lack of knowledge about end-of-life concerns, complex family dynamics, or worries that end-of-life conversations will bring up uncomfortable issues (Sussman and Tétrault, 2022).

6.2.1 Caregiver Training and Support

Training, education, and support are critical for caregivers. Training introduces caregivers to resources, assistive equipment, and community services that can improve health and safety and reduce caregiver strain. This is especially important as someone approaches the end of their life.

Caregiver training and support programs provide:

• Help with challenging behaviors, especially at the end of life.
• Help for caregivers dealing with swallowing issues and loss of appetite.
• Education about the dying process.
• Information about changing personal care needs.

Family caregivers often falter in the final stage of life due distress, increased emotional burden, and grief (Laranjeira et al., 2022). During this time, there is an increased need for good communication consistent support. Being able to access healthcare providers via phone, text or online provides family caregivers with an opportunity to quickly receive answers to questions about medications, behavioral symptoms, and medical issues.

Caregivers can also benefit from personalized, user-friendly online programs and videos. Well-designed programs connect caregivers with a social network, allowing them to share ideas and practical concerns.

6.2.2 Barriers to Family Involvement

Despite the health and social benefits of palliative care and hospice, not everyone receives these services. To qualify for hospice, a person living with dementia must have a diagnosis of severe dementia and have conditions such as aspiration pneumonia, decubitus ulcers, or constant weight loss. The lack of clarity about how long a person with dementia may live is an additional barrier to hospice entry (Oh et al., 2025).

While there are a range of programs and services that assist family caregivers, including education, respite care, and psychosocial interventions, many family caregivers underutilize these resources. Barriers such as lack of awareness, time constraints, stigma, and difficulty accessing services contribute to low use of available supports. As a result, many family caregivers manage their responsibilities with limited assistance, increasing stress and burnout (Kokorelias et al., 2025).

Overall, the treatment and care of people living with dementia at the end of life is often inadequate. On the one hand, people living with dementia are at risk of overtreatment with non-beneficial interventions, such as artificial feeding, restraints, laboratory tests, and the administration of intravenous drugs. On the other hand, some clients receive too few necessary palliative interventions, such as adequate pain management, emotional and social support, spiritual care, and support for their family caregivers (Pinkert and Holle, 2023).

6.3 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 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

A diagnosis of dementia can cause a great deal of grief for the person receiving the diagnosis, as well as family and friends. For family and spousal caregivers, grief is associated with changes in social roles and loss of companionship and friendship. As caregiving duties increase, caregivers will very likely experience a loss of income, loss of privacy and free time, and changes in their normal routine.

The stage, age of onset, degree of insight, communication abilities, and type of dementia impact feelings of grief. A person’s history, personality, coping style, gender, relationships, personal resources, and support networks are also important to consider. Grief is a response to any loss that is significant to an individual and is a process that unfolds in a non-linear manner (Waddington et al., 2023).

6.3.1 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):

1. Grieving for the person I used to be.
2. Concern for how others see me.
3. Grieving the person I will become.
4. Grieving for those who have died.
5. 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).

6.3.2 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 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).

6.3.3 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.

6.3.4 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).

6.3.5 Loss of Friends and Family Members

About 2 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 or not 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 may have been close (Waddington et al., 2023).