May/June 2012 Issue

Helping Families Through Dementia Care-Related Conflicts
By Nancy Pearce, MS, MSW, LISW
Social Work Today
Vol. 12 No. 3 P. 18

Social workers can help families navigate the “new normal” of transitional times when this complex, often chaotic disease shifts and key decisions must be made.

“We are such a dysfunctional family.”

Quite the greeting at my first family meeting after receiving my social work degree, but it was the only thing the three adult Harper children could agree on. They could not stop fighting over what to do with their 84-year-old mother who had been diagnosed with Alzheimer’s disease four years prior and was living with her oldest daughter, Sarah.

“I can’t do all this by myself anymore,” Sarah sobbed. “I’ve always had to do everything.”

Sarah’s sister, Tammy, rolled her eyes. “This all gives me a headache,” she said. “Mom’s not all that bad. You’re such a drama queen!”

Their brother, Seth, held his quiet cool and was the “voice of reason” as he made certain that everyone knew “Mom always liked Tammy the best.”

“Oh dear,” I thought to myself. “And me without a seat belt for the bumpy ride.”

 Unfortunately, the Harper family dynamics are not unique, particularly when it comes to caring for a loved one with Alzheimer’s disease or dementia. The family system is understandably thrown off center by the seemingly random and frequently chaotic progression of Alzheimer’s disease and other dementias. More than 15 million American family caregivers of people with dementia are working significantly more hours than nondementia caregivers, according to the Alzheimer’s Association, and report greater impacts in terms of family strain, mental and physical health problems, time for leisure and other family members, and family conflict (Ory, Hoffman, Yee, Tennstedt, & Schultz, 1999). Old family issues, challenging dynamics, and preexisting tensions can easily resurface, particularly when each person is overworked, tired, and stressed out.

The tensions become particularly high at times when the family must come together to make key decisions as the disease progresses. Lisa P. Gwyther, MSW, education director for the Bryan Alzheimer’s Disease Research Center at Duke University, says initially there may be disagreement about even recognizing and agreeing that there is a problem and then about getting the person evaluated, as well as over money management issues, driving concerns, where to live—the list of turning points is endless. At these times, family dramas tend to play out and cause logjams in wise decision making. As baby boomers age, families will increasingly need social workers’ guidance and expertise.

It is important to note that part of the challenge we face as professionals is that our fuller understanding of how families can come together to provide care for people with dementia has been limited by our often singular focus on the “primary” caregiver, which excludes the contributions of other active family members, who are most often described through “support” nomenclature (Lieberman & Fisher, 1999). Also, the term “caregiver” inherently includes the assumption that care is flowing in one direction: toward the person with dementia. This creates an inequity and does not acknowledge the significant gifts from and participation by the person with dementia (Pearce, 2011).

Therefore, in this article’s exploration, the term “care person” will be used to encourage a shift toward understanding the interactional and mutually beneficial nature of the caring relationship(s). Also, a functional definition of family will be used to refer to anyone who cares about each other, not necessarily those related by blood.

Social workers know we can reduce the family care burden by increasing social support from family and friends and by broadening the ownership of care responsibilities among family members, whether geographically near or far away (Fetsch, Zimmerman, & Barber, 1999). But how do we help families get past the sticking points and the drama that can surface? How can we more effectively help families of people with dementia get beyond their conflicts and become empowered to make wise decisions and cocreate a more compassionate community of care with the person who has dementia?

Framing the ‘New Normal’
One thing we do know for certain from working with families caring for someone diagnosed with a cognitive illness is that dementia can make care persons crazy. The nature of the disease process is very different from a life of dealing with the rational, cognitively intact person who basically calls his or her own shots. Throughout the process of cognitive decline, the person as we knew him or her is constantly changing, and the person interacts with the world and us in increasingly unfamiliar and unpredictable ways. The “craziness” and the “dysfunction” will happen, even in families where everyone gets along. In our work with those involved in family care, it’s most helpful for social workers to focus on what happens to families as a result of the devastating illness, not so much on family pathology.

“A lot of what we do as social workers is normalizing what is normal or expectable about this disease process,” Gwyther says “What is normal and expectable is that this disease is chronic, complex, costly, and catastrophic, and that it is normal and expectable for families to experience conflicts at those transitional times when the disease shifts and key decisions need to be made.”

So in the “new normal” of dementia care involving Mrs. Harper, of course Sarah feels “totally out of control,” Tammy feels “a bit nuts—like totally from another planet,” and even Seth could admit “feeling a bit crazy.” These are normal reactions within the context of this illness. In naming and helping the Harpers understand this new normal, each sibling could feel the layers of fear, anxiety, and panic melting away. They began to move away from all that was wrong and shift toward a new, more productive starting point.

In defining this new normal with families, social workers should note the importance of including a discussion of “the self-care piece.” Marty Richards, MSW, LCSW, a clinical social worker for almost 40 years and author of Caresharing: A Reciprocal Approach to Caregiving and Care Receiving in the Complexities of Aging, Illness or Disability, says one of the most important issues is that the primary care person feels guilty about self-care. So much of what we do as social workers is to “reframe self-care so they understand that if they don’t give to themselves, they have nothing to give to the person they are caring for. Over and over we are permission-givers in that we say, ‘You must do this if you really want to care for your loved one. It is not selfish on your part.’ Our clients need to hear that from us, from their community of faith, from their family—everyone who sees them day to day.”

Therefore, we can help families understand that self-care needs to be an integral part of this new normal for quality of care. Certainly, self-care is important for the overstressed primary care person, but it is equally important for other care persons in the family as each begins to absorb responsibilities and participate more actively in the newly forming family care community.

Getting Everyone on the Same Playing Field
In working with families who are struggling to make responsible decisions, social workers must recognize the importance of naming each family member’s perspective and expectations of an appropriate course of action. Each person enters the discussions with his or her unique set of values, perception of roles, secrets, and spoken and unspoken rules (whether from the family of origin, religious teachings, society, or culture). Family members often are surprised at how differently their siblings view the world when the same people in the same environment ostensibly raised them.

During this process of naming what each person is going through, Richards notes the importance of families understanding that a difference in perspective “isn’t bad or good—it is.” Individual perspectives may be helpful to the decision-making process, while others may get in the way. But there is clearly no gain in judging and accusing because no one is right or wrong. Social workers help families to name the problem(s) and release assumptions and judgments so they can figure out ways to join each other, as Richards says, “on the same playing field.”

To be on the same playing field, most social workers interviewed for this article highlighted the importance of the newly forming team members having some common understandings, such as the following:

• Each person (not only the person with the diagnosis) needs to grieve all the losses that come with a dementing illness. The pathways are unique (again, not right or wrong): While Sarah grieved the loss of a loving parent, Tammy grieved changes in her best friend, and Seth grieved the loss of the hope of ever experiencing an authentic connection with his mother (Pearce, 2010).

• Each person is committed to a common goal, coming together to do what is best for the person with dementia. The siblings may never fix Sarah’s and Seth’s hurt feelings that “Mom always liked Tammy the best,” yet they can agree on this common goal. As Gwyther points out, not everyone has experienced the best relationship with the person who has dementia but can still say, “Just as a human being, she deserves dignified treatment if she is vulnerable and can’t make wise decisions on her behalf.”

• As tensions relax, each person in the family care system becomes more open to hearing the same information and useful knowledge and skills for performing the perhaps unfamiliar work roles and responsibilities they are about to absorb—all of which has been found to significantly decrease care person(s) burden and stress (Hepburn, Tornatore, Center, & Ostwald, 2001). Family satisfaction increases as each person learns to adapt (Fetsch et al.).

Finding Strengths
Throughout the process of cognitive decline, the person with the dementing illness loses certain capabilities, and each member of the family will shift in and out of various roles to adapt and attempt to regain some form of balance. One of social workers’ greatest gifts highlighted by those commenting for this article is in our ability to help mediate the creative discussions that encourage the naming of each person’s strengths and how those qualities can be brought to a specific role or task.

Particularly important to dementia care is our helping families understand that the person with dementia still has strengths and something valuable to offer. Our professional focus on strengths, Richards says, “helps people out of the victim box. Yes, they have real life issues. Yes, there are needs to protect [the person with dementia], but what are the strengths they can build on?”

It’s important to meet the needs of the person with dementia, and this means including the person’s participation and feedback through the disease progression as much as possible and helping families understand when to step in and when to allow for that person’s independence. Darby Morhardt, MSW, LCSW, director of education at Northwestern University’s Cognitive Neurology and Alzheimer’s Disease Center, says, “Families don’t know when to start beginning to help or they might do it too soon. The person with dementia might not be able to drive a car anymore, but that doesn’t mean they can’t decide to go to the museum and go on an excursion with someone to talk about the painting or enjoy that symphony.” The person with dementia “has this rich history of their lives and their work that is usually so ingrained in who they are and in their long-term memories. Families forget the person with dementia can mentor people who are younger.”

Northwestern’s Alzheimer’s Disease Center has a buddy program in which medical students are matched with a “mentor” (the person with dementia is never called a patient). The mentors are honored and validated as having expertise while being valuable contributors to the medical students’ education and humanization.

The Harper family took this strength-focused frame and ran with it. They began by looking at what their mother could still do and matched her with people who allowed her to shine. They reached out to her church, and someone came each week to take her to services because Mrs. Harper loved to sing hymns. Sarah’s daughter found a common bond in watching movies from the 1940s with her grandmother. Sarah’s son enjoyed laundry folding with Gramma, and Seth’s daughter loved the weekly cookie baking lessons (particularly the eating!). Extended relatives frequently mailed cards to stay connected, always bringing a smile to Mrs. Harper’s face. A good friend who used to enjoy traveling with Mrs. Harper would come over to watch the Travel Channel with her several times each week.

The Harper siblings also validated each other’s strengths. Seth’s talent for details made him shine in managing finances, organizing tasks, and doing online researching. Sarah’s “heart of gold” made her an excellent one-on-one care provider, and these responsibilities were shared with one of Mrs. Harper’s good friends and eventually with a “professional care angel” named Kathy. Tammy set up a computer system so she could Skype with her mother each morning and share tea.

Whether taking on full responsibility for a role, sharing responsibilities with others, or taking on more of a supporting role, each person in the most miniscule and grand ways became a valuable member of the team that functioned progressively better through the ebb and flow of decision making needs for more than nine years until Mrs. Harper’s passing.

Social workers cannot change the course of the dementing illness, but we can help families get some sense of stability as they sift through the care decisions required throughout the disease’s progression. Compromise and ongoing negotiation is certainly needed—not everyone will get what they want. About the sticking points, Gwyther says, “One of the nicest things social workers can do is to give a range of options—none of which is going to be ideal—and ask families to choose among equally unattractive alternatives. This is what the disease gives us.”

As families normalize the drama, identify and relax judgment on what drives family members apart, and work together on acknowledging strengths and defining common goals and understandings, they will increasingly develop confidence in their abilities to brainstorm solutions and make wise decisions for their loved one with a dementing illness. This not only impacts the quality of care but has positive effects on family relationships that will extend far beyond the person’s death. Social workers can help family members come to a similar place where each can actually see how, as the Harper family reflected in hindsight, “The disease made us closer.”

— Nancy Pearce, MS, MSW, LISW, is a licensed geriatric social worker with more than 25 years of experience working in long term care and hospice settings. She specializes in dementia care and is the author of Inside Alzheimer’s: How to Hear and Honor Connections With a Person Who Has Dementia.

References
Fetsch, R. J., Zimmerman, T. S., & Barber, C. F. (1999). Consensus management model for families caring for a loved one with dementia. Journal of Extension, 37(6), 6FEA6.

Hepburn, K. W., Tornatore, J., Center, B., & Ostwald, S. W. (2001). Dementia family caregiver training: Affecting beliefs about caregiving and caregiver outcomes. Journal of the American Geriatrics Society, 49(4), 450-457.

Lieberman, M. A., & Fisher, L. (1999). The effects of family conflict resolution and decision making on the provision of help for an elder with Alzheimer’s disease. The Gerontologist, 39(2), 159-166.

Ory, M. G., Hoffman, R. R., III, Yee, J. L., Tennstedt, S., & Schultz, R. (1999). Prevalence and impact of caregiving: A detailed comparison between dementia and nondementia caregivers. The Gerontologist, 39(2), 177-185.

Pearce, N. (2010). Helping families affected by Alzheimer’s. Social Work Today, 10(1), 10-13.

Pearce, N. (2011). Inside Alzheimer’s: How to Hear and Honor Connections With a Person Who Has Dementia. Taylors, SC: Forrason Press.