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Dementia Is a Family Affair

Progressive dementia disorders rarely reserve their venom for only the victim, as caregiving spouses and family members often struggle to cope

By Judy Stringer and Benjamin Rose Institute on Aging

Anxiety and stress can negatively impact family members' physical and emotional health. Not only do they worry about their loved one's future, but they may also find themselves assuming new roles and routines – sometimes as informal caregivers. Meanwhile feelings of anger, guilt and frustration threaten their own relationships and the burden of caregiving can rob them of time to sleep, enjoy activities they love or take care of their own health.

An older adult with dementia being helped by her adult daughter. Next Avenue, dementia family impacts
Credit: Getty

Dementia is no different. At best, a dementia diagnosis challenges family dynamics, according to two senior care specialists at the Cleveland-based Benjamin Rose Institute on Aging. At worst, they said, the disease dismantles familial bonds and drains well-meaning caregivers.

Challenges of a Dementia Diagnosis

"With dementia, we often find a special set of issues to navigate, which don't necessarily impact the care receiver, but have a significant impact on the family and particularly on the primary caregiver," said Lauranne Scharf, Benjamin Rose care consultant. "Many of our caregivers, in fact, have their own chronic conditions and the stress and exhaustion can aggravate those conditions… Dementia can be such a slow and progressive decline that I've had caregivers pass away before their [ill] loved ones."

"We often see families who wait until they are in crisis to really deal with the situation."

Individuals who understand the unique challenges posed by a spouse or a parent's dementia diagnosis will be better prepared to recognize early signs of personal and family strain and, ideally, weaken the disease's far-reaching sting, added Lisa Weitzman, administrator and manager of business development for WeCare…Because You Do, a service of Benjamin Rose Institute on Aging.

"We often see families who wait until they are in crisis to really deal with the situation," said Weitzman.

By that time, she cautioned, some of the damage is already done. However, it is possible to be proactive in providing care and to devise plans before the crisis hits.

'...Or for Worse'

These professionals say it is the spouse or one specific family member of a loved one with dementia who frequently carries the heaviest caregiving burden, holds most of the responsibility for arranging services and provides the greatest time commitment. This is frequently accompanied by an equally great emotional and physical toll.

A spouse may have a "why me"-type of reaction, realizing that many of the couple's hopes and dreams for where and how they would "grow old together" are suddenly stripped away, Scharf said.

Spouses may also have feelings of anger and guilt, she said. The added burden of shouldering new or additional household duties can result in some anger and resentment. This can be followed immediately by "feeling guilty for thinking of themselves when their husband or wife is the one with the illness," Scharf said.

Sometimes the spouse of the person diagnosed with dementia "will actually mourn their loved one who is still physically alive but lacking in the capacity they once had," Weitzman said, "which reinforces that guilt even more."

Other common stressors include anxiety about not being able to properly care for a spouse as the disease progresses, not being able to fulfill their marriage vows or neglecting their own health concerns. 

Couples or family members may have to consider breaking promises made "not to send their family member to a nursing home," Scharf said.

The stigma around an Alzheimer's or dementia diagnosis can also translate into isolation and withdrawal. Many people rely on their past knowledge or stories from family members about how grandpa or great aunt Mary acted without having a complete picture or real understanding of the diagnosis.

When the current experience does not align with family stories, caregivers may withdraw in frustration. Similarly, caregivers may seek to protect their spouse from the critical eye of their children, neighbors and society in general.


The Burden of Emotional Baggage

Some adult children, Scharf said, react by avoiding their loved one with dementia as they find it difficult and uncomfortable, which also can result in guilt. Others try to "come in and take over," she said, often putting them at odds with one or both parents depending on the stage of the disease.

In either case, there is a delicate shifting of roles which requires a respect for each person as an individual. Whether the shift is subtle or immediate can influence the outcome.

It is normal to feel as if you are on a roller coaster of sadness, anger, guilt, stress and depression in the days and years following a loved one's dementia diagnosis.

In some cases, dementia onset also compels adult children to address unresolved issues.

"Maybe there's fifteen or thirty years of issues with mom or dad, and oh my gosh, now there's a diagnosis and you need to resolve all of it. But you're trying to resolve that with somebody who no longer has total cognitive capacity, and each adult child may have very different issues to resolve," Weitzman said.

The result, she noted, is frustration on both sides of the table.

In addition, challenges can arise when adult children are unexpectedly thrust into the caregiver role. Children might struggle, for example, to see their parents as vulnerable and in need of assistance. Parents might be uncomfortable accepting help from their child, resent losing their independence or both.

As the disease progresses, the adult child caregiver can develop resentment as the burden of cleaning, driving, preparing meals and coordinating care displaces time with his or her own family or on beloved activities or career development. He or she might also feel unappreciated or be angered by a perceived lack of acknowledgement from the person who is receiving the care.

Whatever the individual circumstances, Weitzman said the bottom line is that dementia influences the lives of everyone in the family.

She and Scharf shared strategies aimed at mitigating the negative impact:

  • Educate yourself. Not every case of Alzheimer’s or dementia is the same. Scharf said it’s important to obtain a thorough geriatric assessment, become knowledgeable about symptoms and honor the individual at their current capacity and strengths.
  • Come together. “I love family phone conferences and face-to-face family meetings,” Scharf said. “Getting everybody together is powerful, because the he-said-she-said piecemeal conversations can be very misleading.” Find out how everyone is feeling. Don’t be afraid to have those difficult conversations, she said. Family therapy can also be beneficial to help resolve family issues and get everyone on the same page around specifics of care.
  • Share the load. Identify needs and distribute them. While not everyone is comfortable with some of the direct care needs like bathing or toileting, there are also household duties like paying bills or preparing a meal. Don’t expect the chore list to be “fair,” Scharf said, but do approach it from a collaborative mindset. Also, include your loved one with dementia in the duties for as long as possible. Doing so will make him or her feel valued, she said.    
  • Take care of the caregiver. Weitzman said family caregivers are notoriously reluctant to ask for help, partly because they see what they are doing as a family responsibility. Instead of waiting for them to request assistance or issuing a blanket “let me know if you need anything” statement, Weitzman suggested that other family members and friends ask caregivers to name just one or two things “you or someone else on the support team can help take off their plate.”
  • Deal with your stuff. It is normal to feel as if you are on a roller coaster of sadness, anger, guilt, stress and depression in the days and years following a loved one’s dementia diagnosis. Talk about these emotions with friends and family and seek professional help if they are interfering with other relationships or causing you severe emotional distress.

"So often, our health care systems are focused on the person who has the actual diagnosis, and there's not this recognition that chronic health conditions and particularly dementia quickly become a family affair," Weitzman said. "Whatever care role you are playing, you are worthy of support so that you can continue to do that."

She added that WeCare consultants at Benjamin Rose can help families with the personal, more emotional side of caregiving, "providing strategies for challenging conversations, ways to bring family members together and space to cope with all of the conflicting emotions that caregiving unleashes."

The Alzheimer's Association also provides valuable family support information on its website, along with a digital locator that can connect caregivers with professionals and support options in their area.

Judy Stringer photo
Judy Stringer is a freelance writer and editor with more than 25 years of experience contributing to media outlets. Many of her frequent articles appear in Crain’s Cleveland Business, where she also writes for the paper’s custom content division, Crain Content Studio. In addition to business, she covers community news and oversees special sections about senior living, wellness and home improvement for ScripType Publishing, a collection of nine monthly magazines in Summit and Cuyahoga counties in Ohio. Read More
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