Family and caregiver support

Who family caregivers are, and what they carry

A family caregiver is anyone who helps a relative, partner or friend with a health condition or disability, usually without pay. It might be a spouse, an adult child, a neighbour, or a grandchild. Most never chose the title.

The numbers are large. Caregiving in the US 2025, from AARP and the National Alliance for Caregiving, reports 63 million family caregivers in the United States, about "one in every four adults." It reports that over 40% provide high-intensity care, that many perform complex medical tasks "like administering injections or managing equipment, yet only 22% receive training," that one in five report poor health, that half report a negative financial impact, and that seven in ten are employed.

An earlier consensus report from the National Academies of Sciences, Engineering, and Medicine, Families Caring for an Aging America (2016), counted "at least 17.7 million" people caring for an older adult with a health or functional limitation. (The two figures differ because the reports use different definitions and years; the 2016 figure counts only caregivers of older adults.) The National Academies found that, compared with non-caregivers, family caregivers of older adults "are more likely to experience emotional distress, depression, anxiety, or social isolation," and that long hours caring for someone with advanced dementia carry particular risk. It also found that caregivers are "often marginalized" by health care: "some providers exclude them from older adults' treatment decisions and care planning while also assuming they are able, have the knowledge, and are willing to perform essential tasks." Caregivers, it says, describe "learning by trial and error" and "fear of making a mistake."

Keep that last line in mind. The daughter snapping at a nurse, or the son giving medicine on his own schedule, may be acting out of fear of getting it wrong.

Grief that starts before the death

Families are often surprised to find themselves grieving while the person is still alive. Two ideas help name it.

Anticipatory grief

Anticipatory grief is, in one widely used definition quoted in a 2022 study, "any grief occurring prior to a loss, as distinguished from the grief which occurs at or after a loss." That small qualitative study interviewed eight people caring at home for a dying spouse. They described sadness, fear, anxiety and anger, often pushed aside while they focused on the daily work of care, and many leaned on faith. Eight people in one country cannot tell us what everyone feels, but the pattern will be familiar to anyone who has sat with families: grief, and guilt about grieving, and the sense of having no time to feel either.

Ambiguous loss

Ambiguous loss is a term from family therapist Pauline Boss. In a guide published by the Family Caregiver Alliance, she describes the stress of a loved one who is "here, but not here—here physically, but gone mentally and psychologically," as often happens with dementia. Unlike a death, there is no clear moment of loss and no ritual for it. Her suggestions for families include naming the problem as caused by the illness rather than by personal failure, and practising "both/and" thinking: "She is still here, and I have already lost much of her."

What to say, and what not to

• Example: "A lot of people start grieving before the death. It doesn't mean you've given up on him."
• Example: "It sounds like you're missing her even while you're sitting next to her."
• Avoid "at least" sentences ("At least you've had time to prepare"). They close the conversation.
• Do not diagnose. If grief turns into hopelessness, not eating, or talk of not wanting to live, encourage the person to see their own clinician; if they speak of suicide, 988 is there any time.

Grief after the death is covered on the site's grief page and in Module 10.

Families as systems: roles, old conflicts, and the check-in

A family is a system: move one part and the others shift. Near a death, families fall into roles, often without noticing. You are not a therapist, and you do not need to analyse anyone. It helps simply to recognise the common roles.

Old conflicts resurface near a death: who was the favourite, who left, who paid. You will not resolve them, and it is not your job to try. Your job is to keep the room safe enough for the person who is dying.

A short, kind family check-in

When a family asks for help talking together, a short check-in often works better than a long meeting. A pattern you might use:

1. Ask permission from the dying person if they can answer, and from the main caregiver. Agree who will be there, including anyone joining by phone.
2. Keep it short: fifteen to twenty minutes, and say so at the start.
3. Start with the person. Their words, if they can speak; their written wishes (see advance directives); or "What would Dad say if he were in this conversation?"
4. Three questions only: What is going well? What is hardest right now? What do we need this week?
5. Everyone speaks once before anyone speaks twice.
6. Sort, do not decide. Clinical questions go on a list for the nurse or doctor. Legal and money questions go to the right person. The family decides family matters.
7. Close with a written list: who does what, by when, and who calls the hospice about which question.

Not taking sides

Families will try to recruit you. Staying neutral is not the same as staying silent. You can reflect each view fairly and bring the conversation back to the dying person.

• Example: "I hear two things that both come from love: wanting more time, and not wanting her to suffer. The nurse can help with what's medically possible. Can we come back to what your mother told you she wanted?"
• Example: "I'm not the right person to say who's right. I can help you get the question to someone who can answer it."

If the person can still speak, ask them directly, with the family present, and let their answer stand. That is the most important way to protect the dying person's voice.

Respite: rest for the people doing the caring

Respite means a planned break for a caregiver while someone else provides care. It can be a few hours or a few days. Tired caregivers often refuse it out of guilt; it helps to say, "Resting is part of caring for him."

Hospice respite

For people enrolled in the Medicare hospice benefit, respite is one of the levels of care a hospice provides. Federal rules define it as "short-term inpatient care provided to the individual only when necessary to relieve the family members or other persons caring for the individual." It "may be provided only on an occasional basis and may not be reimbursed for more than five consecutive days at a time" (42 CFR 418.204). It happens in a facility that meets hospice rules, not at home. Whether respite is right, when, and where, is decided by the hospice team with the family. Your part is to say it exists and to encourage the family to ask. Do not promise that it will be available, and do not quote costs.

Community help

The Caregiver Support Program serves defined groups, including adult family members caring for someone aged 60 or older and caregivers of a person of any age with Alzheimer's disease. What is offered, and who qualifies, is decided locally. Point families to the door; let the agency answer the eligibility question.

Children, teens, dementia and disability

Children and teens near a death

Adults often want to protect children by saying little. The Dougy Center, a national grief center for children and families, advises the opposite: "Be honest and give clear, accurate information." It suggests avoiding phrases like "not getting better" or "passing on," which confuse younger children, and notes that "when you use the word 'dying' it helps children understand what is happening." It encourages adults to acknowledge children's feelings, to be all right with saying "I don't know," and to offer children choices about whether and how to be involved: visiting, making a card, recording a message. It says children can be reminded that their person "can likely hear them," and that if a child chooses not to take part, that is all right too.

Your role is to support the adults to include children honestly, not to counsel the children yourself. The Dougy Center notes that most children will not need professional services, and that some will benefit from a support group or therapist. Suggest the family ask the hospice social worker about child-focused support; some hospitals and hospices have child-life specialists or grief counsellors. The death of a child is outside the scope of this training; refer those families to specialists.

People with dementia

NIA notes that in late-stage Alzheimer's disease a person "may not be able to tell you that they are in pain," and may instead groan, grimace, become upset, or guard part of the body. Those signs go straight to the nurse. For comfort, NIA suggests telling stories, showing photos, touch or massage, and music or natural sounds, which "seems to relax some people." Families of people with dementia may have been grieving for years; ambiguous loss is often the right name for it.

People with disabilities

Start from the assumption that the person has a voice, even if they use words, signs, a device or a support person to express it. Ask how they communicate, and include the people who know them best, which may be paid support staff. The Administration for Community Living describes supported decision-making, in which "individuals retain their right to make decisions for themselves, with the support of trusted individuals they choose." Talk to the person, not over them. Questions about guardianship or who has legal authority go to an attorney.

Safety: the caregiver's body, and signs of harm

Lifting and moving

Caregivers hurt their backs lifting and turning. NIA advises caregivers to "know your limits when lifting or moving the person," and says a physical or occupational therapist, home health aide, or nurse "can show you how to move the person safely." A doula does not lift or transfer patients. When you see a caregiver struggling, help them ask the team for training and equipment, such as a hospital bed or other aids the team thinks fit. If the person falls, do not lift them; call the hospice line or, in an emergency, 911.

Elder mistreatment and neglect

The Administration for Community Living lists physical, sexual and emotional abuse, neglect, financial exploitation, abandonment and self-neglect as forms of elder abuse. Warning signs include unexplained injuries, poor hygiene, withdrawal, strained relationships, and sudden money problems.

Be careful: some of these signs overlap with dying itself. Weight loss, skin breakdown, withdrawal and confusion can all be part of a serious illness. You are not an investigator, and you should not reach conclusions or confront anyone. You can notice, write down what you saw in plain facts, and raise it.

Adult Protective Services and reporting duties

Adult Protective Services (APS) is, in the words of an ACL fact sheet, "a social service program authorized by law in every state to receive and investigate reports" of maltreatment of older or vulnerable adults. The same fact sheet says APS "can differ from state to state and even from county to county" in definitions, eligibility and practice; that in nearly every state certain professions must report ("mandatory reporting"), while some states require all citizens to report; and that all states accept voluntary and anonymous reports. It also notes that adults have the right to decline protective services unless a qualified professional finds they cannot make decisions for themselves.

Whether you, as a doula, are a mandatory reporter depends on your state and your role (for example, if a hospice has engaged you as a volunteer, its policies also apply). Learn your local rules before you take on clients. This module is not legal advice.

Your place in the caregiver's circle

A doula joins a circle that already exists. You do not replace family, who hold the relationship and the decisions. You do not replace paid aides or home care workers, who do hands-on personal care. You do not replace the hospice or palliative team, who carry clinical responsibility. And you do not bill insurance for your time; see how doula work is paid for the facts. What you can do, and what families often lack, is help them know who to call for what.

Write this table out for the family with real names and numbers, and put it where everyone can see it. More on working beside the team is in Module 14.