More than 80% of the assistance for older adults in the U.S. is provided by informal caregivers, who generally are family members, relatives, and friends providing unpaid care for family members with chronic diseases such as dementia (Shubair, 2025).
As a person living with dementia nears the end of their life, caregiving can become an overwhelming experience. It can lead to significant stress and burden for family caregivers who can experience high levels of emotional, physical, and financial distress and burnout. These stressors can affect a caregiver’s health and the quality of care they provide (Tamer et al., 2025).
5.1 Types and Causes of Stress for the Caregiver
When my mom still had a good appetite, could walk around the house, take care of her garden, answer the phone, and manage the TV, it was easy. As her dementia progressed, lack of sleep, family squabbles, and having to directly help with everything made things a lot more stressful. There were more medical appointments with a very disinterested and unhelpful doctor. I ignored my own needs because there was no one to watch her while I was gone.
Family Caregiver, West Palm Beach, FL
5.1.1 Emotional Stress
More than half of people caring for a person living with dementia rate the emotional stress of caregiving as high or very high and about 40% report symptoms of depression. One in five cut back on their own healthcare visits because of their care responsibilities (Alzheimer’s Association, 2025).
A caregiver’s emotional state is influenced by the severity of dementia, the perceived effectiveness of treatment, safety issues, challenging behaviors, and social support. Caring for a person living with dementia can lead to health problems such as hypertension and sleep disorders (Li et al., 2024).
Caregivers can experience high levels of anxiety, depression, stress, and distress, which can harm the quality of the relationship between the caregiver and person they are caring for, sometimes leading to caregiver negligence. A caregiver’s emotional stress can get worse as a person’s dementia progresses, especially when a caregiver does not understand the reason behind a challenging behavior (Li et al., 2024).
5.1.2 Financial Stress
The economic impact of caring for a person living with dementia adds to a caregiver’s emotional stress. A study in 2013 examining caregivers for older adults found that a 1% increase in caregiving hours corresponded to an approximately 10% decrease in the employment rate among caregivers.
Alzheimer’s Disease International
Each year more than 12 million family members and friends provide over 192 billion hours of unpaid care to those with Alzheimer's and other dementias. This contribution is valued at nearly $413 billion (Alzheimer’s Association, 2025).
The financial strain on caregivers is a well-known challenge and the vast majority experience financial difficulties. Caring for a person living with dementia is estimated to cost nearly $400,000 per person over the course of the disease, 70% of which is borne by families in the form of unpaid care and out-of-pocket expenses (Shubair, 2025).
Caregivers of older adults living with dementia report lower household incomes compared to caregivers of individuals without dementia. Limited financial resources reduce access to paid support services and increase reliance on family care, increasing the strain on caregivers. Financial stress has also been associated with adverse psychological and physical health outcomes among caregivers, further compounding the already heightened demands of dementia care (Shubair, 2025).
5.1.3 Physical Stress
Physical stress and musculoskeletal injuries are common among family caregivers, home health aides, nurses, nursing assistants, home care providers, and physical and occupational therapists. Care settings can be unpredictable and cluttered, and many lack proper assistive equipment and help.
Assisting a person with transfers, positioning, bed mobility, bathing, toileting, and other daily activities is physically demanding. Handling equipment, lifting a person after a fall, and providing support during transfers can lead to physical strain and injury.
For a person living with dementia, maintaining as much independence as possible reduces the physical stress on caregivers. Light weight wheelchairs, transfer poles, lift chairs, grab bars, overhead bars in the bed, and other assistive equipment improve independence and reduce a caregiver’s physical strain.
Factors and Characteristics Associated with Caregiver Stress |
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Factors |
Characteristics associated with caregiver stress |
Demography |
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Caregiver personality |
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Perception and experience of caregiving role |
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Coping strategies |
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Relationship factors |
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5.2 Identifying and Assessing Caregiver Stress
There are dozens of tests and scales that can help identify and assess caregiver stress. Yet caregiver stress is regularly overlooked by healthcare professionals. This may be partly because caregivers minimize their stress, have guilt about feeling stress, and are reluctant to focus attention on their own problems.
Healthcare workers and providers can support caregivers by helping them understand that caregiver needs are as important as the needs of the person they are caring for. During an appointment or visit, a screening tool can assess the amount of stress the caregiver is experiencing.
The Zarit Burden Interview in Dementia (ZBI) tool is a quick tool for assessing caregiver stress. It explores four items related to a caregiver’s self-care, stress, and burden. It is scored from 1 (never feel stress) to 5 (almost always feel stress), for a total score ranging from a minimum of 4 points to a maximum of 20 points. Caregiver burden is present when the total score is greater than or equal to 10 and absent when the score is less than 10 (García-Martín et al., 2023).
Caregiver distress can also be measured using the Neuropsychiatric Inventory Caregiver Distress Scale (NPI-D). This tool asks caregivers to rate their level of caregiver distress using a 0-5 scale:
0 = not at all distressing,
1 = minimally distressing,
2 = mildly distressing,
3 = moderately distressing,
4 = severely distressing and
5 = very severely or extremely distressing (García-Martín et al., 2023).
Barbara and Jim
Barbara cares for her husband Jim at home and refuses any sort of help. Barbara is in denial of her husband’s dementia. She is also in denial of her lack of knowledge, her poor coping skills, her short temper, and her unwillingness to seek help. This has created a great deal of stress and, at times, abusive behavior toward Jim.
Friends and family have recommended that Barbara enroll her husband in hospice and attend a caregiver support group. She agrees to hospice services but refuses to attend a support group.
Sana, a hospice nurse arrives at Barbara’s home and notes that Jim is cooperative and friendly, but Barbara appears to be stressed out. Sana notices that Barbara seems impatient with her husband and raises her voice in frustration when he doesn’t answer questions quickly enough. As soon as Jim is in Sana’s hands, Barbara says she has to go grocery shopping and leaves the house.
Sana sits down next to Jim and asks him how he’s doing. He turns to her and says urgently “Help me—she’s trying to kill me!” This startles Sana and her first thought is that Jim has dementia and is probably just being paranoid. What should Sana do?
Sana is new to the job, so she discusses the situation with her supervisor. Her supervisor is familiar with Jim’s situation and tells Sana that Barbara’s sister has already made a report to Adult Protective Services, which is monitoring the situation.
Sana’s supervisor asks one of the nurses to have Barbara complete the Zarit Burden Interview in Dementia (ZBI) tool at the next home visit. Barbara agrees and scores 19/20, indicating she is highly stressed. Over the next couple of weeks, the staff provide both online and in-person resources and support services for Barbara. They help her find a caregiver and order a home safety assessment. Barbara says she is grateful for all the support and even agrees to attend a support group. Jim appears to be more relaxed and never repeats his fear that Barabara is trying to kill him.
5.3 Strategies for Reducing Caregiver Stress
Caregiver stress can be addressed through the use of education, training, support, and respite care. 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 reduce their stress by paying attention to their own health, getting enough sleep, eating properly, seeing their own healthcare providers. Sharing their feelings about their caregiving duties with family, and friends and attending in-person or online support groups can also reduce stress.
Adult day care centers and some skilled nursing facilities offer respite and support services, providing relief for family caregivers, reducing caregiver burden, and increasing caregiver motivation. A primary goal is to develop knowledge and skills in dementia care and prevent early placement.
Addressing Caregiver Stress |
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Reducing Caregiver Stress |
Things to Avoid |
Join a support group (or see a counselor). Set limits on caregiving time and responsibility. Become an educated caregiver. Discuss your situation with your employer. Accept changes as they occur. Make legal and financial plans. Take regular breaks. Use daycare services and respite care services. |
Isolating yourself. Trying to be all things to all people. Expecting to have all the answers. Denying your own fears about dementia and aging. |
Source: NIH, public domain.
5.3.1 Respite Care
Respite services support caregivers by providing time away from the person they are caring for. This provides a chance to relax and recharge while making time for errands and other tasks. Respite services may be available in a person’s home, an adult day care center, in the community, or in long-term care communities. Respite care is available for up to 5 days and nights and is covered by Medicare Part A.
Respite care can provide relief for family caregivers. Source: NIH, public domain.
5.3.2 Positive Aspects of Caregiving
Although it is commonly believed that someone caring for a person living with dementia is under a great deal of stress (especially as the person’s dementia progresses), caregivers also encounter positive experiences. These positive aspects can play an important role in the caregiver’s stress and well-being (Yuan et al., 2023).
Caring for a person living with dementia can provide a sense of meaning, create feelings of accomplishment, and improve the quality of relationships between family. There can also be a sense of personal growth and purpose in life (Wiegelmann et al., 2021).
Nearly half of caregivers of people living with dementia indicate that providing help to someone with cognitive impairment was very rewarding. Greater satisfaction from dementia caregiving was associated with more emotional support from family members and friends (Alzheimer’s Association, 2025).
5.3.3 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 research on the important role that informal, unpaid caregivers play in the care of dependent older adults.
The caregiver bill of rights contains nine items that encourage caregivers to consider their own health and well-being and to set boundaries. The Caregiver Bill of Rights states, “I have the right to”:
- Take care of myself.
- Seek help from others.
- Maintain parts of my life that do not include the person I care for.
- Get angry or depressed.
- Resist attempts by the person I am caring for to manipulate me.
- Receive consideration, affection, forgiveness, and acceptance from the person I am caring for.
- Take pride in what I am doing.
- Protect my individuality.
- Demand resources to support and aid caregivers.