“Families are messy, aren’t they?” a daughter commented during a series of focus groups I ran with .
Many people would agree with that sentiment. The when caring for someone who has a disease such as Alzheimer’s or another form of dementia that impairs their .
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 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 can be especially thorny because of the ways the condition changes how a person behaves and how they . 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 with their family members. For instance, children are more likely to have 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 – an umbrella term describing a around thinking, remembering and reasoning. That number is expected to reach over as the baby boomers age.
People with dementia interact with many people in their families and communities. Over half of Americans say that they , and more than a third of extended families . In 2022, over 5 million family caregivers were . 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 or their children live far away – and more distance often . Meanwhile, cultural acceptance of the idea of or going “no contact” has increased – as has a growing recognition of . That means more older adults are , 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 – generally, the daughters of aging parents. Adult children continue to be the for older adults with dementia in the U.S., but their characteristics are changing.
Today, more caregivers are . And , and .
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 to care for an older relative with dementia than for a relative with a physical illness.
These expectations can 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 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 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 , leading to potential . 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 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 . Many caregivers – 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 and for . Preparation can include making , 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 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 , and . It is important to continue to even as their .
In our focus groups, caregivers said they most appreciated in dealing both with caregiving and family dynamics. and other programs, including , can give caregivers some time away. Families are of . These programs may also not be everyone’s cup of tea – perhaps due to around avoiding outside involvement.
If you are seeking outside support, start with your local . These agencies are a network of 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 . 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 . Support groups can help families connect with others .
In addition, community engagement for people with dementia and their caregivers is increasingly widespread. Local can provide outings and other activities, as well as another place to meet other caregivers similar to support groups.
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