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Dementia caregiving can expose hidden family tensions – but early planning can ease the strain
Dementia caregiving can expose hidden family tensions – but early planning can ease the strain. Originally published by The Conversation.
By Sarah E. Patterson, Research Assistant Professor of Demography, University of Michigan · 2026-09-23T13:06:07.639Z
Caring for someone with dementia can be especially challenging because the condition can profoundly change how a person interacts with their loved ones. Peter Kindersley via Centre for Ageing Better, CC BY “Families are messy, aren’t they?” a daughter commented during a series of focus groups I ran with caregivers of older adults with memory issues https://doi.org/10.1177/15333175251357328 . Many people would agree with that sentiment. The complexity can be compounded https://doi.org/10.1016/j.jagp.2017.12.004 when caring for someone who has a disease such as Alzheimer’s or another form of dementia that impairs their memory, language and sometimes personality https://doi.org/10.1177/14713012251324705 . Yet discussing how caring for their loved one affects family dynamics – be it longstanding family feuds, unmet expectations about family responsibilities or the desire to keep health issues private – is often seen as taboo. I am a sociologist and demographer studying how family dynamics https://scholar.google.com/citations?user=tFkt zEAAAAJ&hl=en change as people get older and need care – and how that relates to expectations about caregiving for older adults. The makeup of families is changing, and that’s shaking up how caregiving can reverberate through family relationships. Caring for family members or friends with dementia https://theconversation.com/family and friends shoulder the real cost of dementia 224b in unpaid care 256782 can be especially thorny because of the ways the condition changes how a person behaves and how they interact with others https://doi.org/10.1016/j.jagp.2017.12.004 . But a little planning and support can help families through the challenges. Caregiving is a common experience Americans are living much longer, which means that people are sharing more years of their lives https://doi.org/10.1007/s13524 019 00766 6 with their family members. For instance, children are more likely to have a living grandparent https://doi.org/10.1007/s13524 019 00795 1 today than in previous generations. And that means it’s more likely that people will have a parent or grandparent who may experience cognitive decline at some point in their lives. More than 5 million U.S. adults age 65 and older are currently living with dementia https://doi.org/10.1002/alz70860 101358 – an umbrella term describing a loss of cognitive abilities https://www.nia.nih.gov/health/alzheimers and dementia/what dementia symptoms types and diagnosis around thinking, remembering and reasoning. That number is expected to reach over 13 million by 2060 https://doi.org/10.1016/j.jalz.2018.06.3063 as the baby boomers age.
Caregiving for people with dementia is a family affair. Flashpop/DigitalVision via Getty Images People with dementia interact with many people in their families and communities. Over half of Americans say that they know someone with dementia https://ropercenter.cornell.edu/ipoll/search?q=USAP.071311.R20 , and more than a third of extended families include an older adult with dementia https://doi.org/10.1002/alz.70451 . In 2022, over 5 million family caregivers were taking care of an older adult with dementia https://doi.org/10.1377/hlthaff.2024.00978 . That’s 1 out of every 5 people caring for an older adult in the U.S. At the same time, family sizes are shrinking, and more older adults do not have children https://doi.org/10.1093/geronb/gbx068 or their children live far away – and more distance often equates to less caregiving https://doi.org/10.1016/j.socscimed.2021.114627 . Meanwhile, cultural acceptance of the idea of family estrangement https://theconversation.com/the real reason many americans are cutting ties with their parents and siblings 283957 or going “no contact” has increased – as has a growing recognition of chosen family https://doi.org/10.1111/jomf.70065 . That means more older adults are aging alone https://doi.org/10.1177/0164027520907332 , with limited support, or with other people who may not have the legal benefits of immediate family. The caregiving landscape is shifting, too. Historically, middle age women were the largest group of caregivers https://doi.org/10.1093/geront/gnx093 – generally, the daughters of aging parents. Adult children continue to be the largest group of caregivers https://doi.org/10.1377/hlthaff.2024.00978 for older adults with dementia in the U.S., but their characteristics are changing. Today, more caregivers are age 65 and older themselves https://doi.org/10.1377/hlthaff.2024.00978 . And more men https://doi.org/10.1111/jomf.70030 , young people https://doi.org/10.1215/00703370 11383976 and friends are also providing care https://doi.org/10.1001/jamanetworkopen.2026.21697 . All these factors combined are changing who is available to provide care for aging family members. Great expectations Dementia can amplify both expectations and family messiness. Using data from a survey conducted by the RAND Corporation, a nonprofit research organization, my colleagues and I found that Americans feel families have a greater responsibility https://doi.org/10.1002/bsa3.70066 to care for an older relative with dementia than for a relative with a physical illness. These expectations can motivate some caregivers https://doi.org/10.1177/10748407241288606 to provide care, even in difficult circumstances. But for others, old family disagreements, rivalries or unresolved points of tension can continue to haunt relationships in ways that can clash with family expectations https://nyupress.org/9781479813339/families we keep/ around caretaking. Dementia further complicates these feelings. For instance, one participant in our focus groups described a friend who struggled with caregiving because he felt compelled to do it even though his dad had not cared for him when he was a child. Shrinking families also leads to constrained options. Some caregivers report feeling they have no choice https://doi.org/10.1007/s12529 023 10246 2 but to provide care, especially when the older adult has dementia. In our focus groups, this was often because no one else was available due to small family sizes or even family estrangement. Caring for someone with dementia often requires a large circle of support https://doi.org/10.1093/geronb/gbz065 , leading to potential clashes between family members https://doi.org/10.1093/geront/gnag040 . In our focus groups, this played out as caregivers disagreeing on roles and responsibilities in ways that often reflected prior family tensions. What can you do? There’s likely no way to untangle decades of family dynamics before caretaking responsibilities kick in. But a few guidelines can help ensure that caregivers feel supported. Thinking ahead: Many caregivers in our focus groups felt thrown into their roles because their older friend or relative did not make plans for their care https://doi.org/10.1177/15333175251357328 in case their health were to fail. The lack of planning meant that caregivers were left to make decisions for the older adult, while worrying about whether they were adhering to their preferences https://doi.org/10.1080/13607863.2015.1049117 . Many caregivers found this incredibly stressful https://doi.org/10.1332/23978821Y2025D000000166 – particularly as dementia’s progression makes it more difficult for people to make their wishes clear. That’s why making plans in advance is vital – both for dementia specifically https://dementia directive.org/ and for other types of health issues https://doi.org/10.1093/geroni/igx012 . Preparation can include making legal arrangements https://theconversation.com/end of life planning can be hampered by misconceptions but the process is easier than you might think 249265 , such as healthcare directives and wills, as well as deciding who should provide care and what that care should entail. This is especially important for people who may not have family available https://doi.org/10.1016/j.socscimed.2026.119251 to care for them. Collaboration: Caring for a family member – particularly someone undergoing challenging cognitive changes and especially with tricky family history – may take a lot of negotiation https://doi.org/10.1177/1471301218780768 , communication https://doi.org/10.1111/jpm.12822 and flexibility https://doi.org/10.1111/jftr.70054 . It is important to continue to include the older adult in these conversations https://doi.org/10.1177/14713012251389447 even as their disease progresses https://www.girlfridayproductions.com/titles/before i lose my own mind . In our focus groups, caregivers said they most appreciated knowing they weren’t alone https://doi.org/10.1145/3555133 in dealing both with caregiving and family dynamics. Respite care https://doi.org/10.1093/gerona/glae036 and other programs, including support groups https://doi.org/10.1080/13607863.2023.2194848 , can give caregivers some time away. Families are often unaware https://doi.org/10.1186/s13690 018 0316 y of these programs https://doi.org/10.1002/alz.70013 . These programs may also not be everyone’s cup of tea – perhaps due to cultural or personal values https://doi.org/10.1332/23978821Y2024D000000059 around avoiding outside involvement. If you are seeking outside support, start with your local Area Agency on Aging https://ihpi.umich.edu/news events/news/7 things every family caregiver should know many dont . These agencies are a network of local nonprofit organizations https://eldercare.acl.gov/home around the country that help connect older adults and their caregivers to resources, including help with meals, long term care planning or accessing respite care. Seeking community: Caregiving often involves supporting other caregivers https://doi.org/10.1001/jamanetworkopen.2025.44315 . For example, one participant in our focus groups noted that her efforts caring for her grandmother also supported her mother, whom she saw as the main caregiver. But because family dynamics and histories vary so widely, some care networks function cohesively while others may struggle https://doi.org/10.1093/geronb/gbaf040 . Support groups can help families connect with others navigating similar challenges https://www.mentalhealth.com/library/support groups . In addition, community engagement for people with dementia and their caregivers is increasingly widespread. Local “dementia friendly” programming https://www.dementiafriendlyservices.org/ can provide outings and other activities, as well as another place to meet other caregivers similar to support groups.
Sarah E. Patterson receives funding from that National Institute on Aging. She volunteers with the Alzheimer's Association.