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Social Workers as Messengers: Bridging the Gap Between Health Professionals and Families Affected by Alzheimer’s Disease
By Susan London, LMSW, QDCP

Mr. Miller* walked into the nursing home to find his wife frustrated as she leafed through a pile of junk mail. When he approached her, she screamed, “Why didn’t you get these paid? Keep this up and you won’t be working here for long!” Mr. Miller soon realized that his wife believed she was still at work 19 years after retiring. He was shaken by how much her dementia had progressed.

After he gently explained that the letters were merely mail solicitations, she threw up her hands and called him names no loving spouse deserves. Feeling hopeless, Mr. Miller spoke with the facility’s medical director. The physician noted that Mrs. Miller’s symptoms were common and suggested adding an antipsychotic medication. Mr. Miller agreed, but the treatment left his wife sleepy and more disoriented.

A team meeting that included the medical director, a social worker, and other staff and family members was called to further discuss Mrs. Miller’s symptoms and an action plan. After an evaluation by the social worker and weighing alternative solutions, the team decided to stop the new medication and focus instead on behavioral interventions—recreational activities that would fulfill Mrs. Miller’s desire to feel useful again. The staff took note of Mrs. Miller’s past skills and asked her to perform familiar “jobs,” such as labeling envelopes and filing charts. Thrilled by her “position with the company,” Mrs. Miller completed her tasks with pride and displayed a renewed self-worth.

As the incidence of Alzheimer’s disease climbs along with the nation’s aging population, social workers will likely be increasingly called on to intervene in cases involving this illness . Delivering quality care requires open avenues of communication so that all parties involved can work together toward shared goals. When there are cracks in the foundation, enlisting the help of a social worker can help close up communication gaps and can lead to more positive outcomes.

In the case of dementia, a social worker’s role as a messenger often stems from a break down in communication on multiple fronts. For one, most individuals with the illness can’t speak for themselves. While people with illnesses such as cancer or diabetes can tell you how they feel—they may ask for medication when in pain or a visit with relatives when feeling lonely—individuals with dementia often can’t, especially as they lose verbal skills and other cognitive abilities as the disease progresses.

For many family members, denial, fear, grief, and a lack of knowledge and preparedness about Alzheimer’s disease often impede their ability to ask the right questions or even discuss the issue at all; moreover, when flooded by a tidal wave of emotions or trying to navigate through a swell of everyday responsibilities, they find it challenging to keep their heads above water.

And there could be information shortfalls from physicians and other healthcare professionals. A professional may not be trained in dementia care, may be limited by time or other reasons to have constructive conversations with caregivers, or may be unaware of community support services. According to a 2007 survey of a cross-section of caregivers of loved ones with Alzheimer’s disease, “ICAN 2: Investigating Caregivers’ Attitudes and Needs,” conducted on behalf of the Alzheimer’s Foundation of America, caregivers wished they had more information about treatment options (75%), received more general information about Alzheimer’s disease (75%), and obtained more support from healthcare professionals (68%) at the time of diagnosis. In addition, local resources would also have been useful (64%). A 2008 study published in Canadian Family Physician found that a substantial proportion of physicians lacked knowledge about or confidence in community resources, and only 16.9% maintained office reference lists of community services that may benefit patients or caregivers.

Carole B. Cox, MSW, Ph D , a professor at the Gr aduate School of Social Service at Fordham University in New York, acknowledges that a gap exists and calls it a “real public health problem.” “Often doctors do not give any information with the diagnosis. … [Caregivers] are not given any referrals or things to expect. There’s no follow-up with the caregiver,” she says.

According to Esther Chachkes, DSW, a consultant at the New York University (NYU) Silver School of Social Work and former director of social work at the NYU Langone Medical Center, “Like with many illnesses, there does not seem to be a real honest enough discussion between professional caregivers and families so they can understand the trajectory of [their loved one’s] condition.”

Lawrence S. Honig, M D , Ph D , an associate professor of clinical neurology at the Taub Institute for Research on Alzheimer’s Disease and the Aging Brain at the Gertrude H. Sergievsky Center and the neurology department at Columbia University College of Physicians and Surgeons in New York, believes social workers should be brought into the picture. “Physicians are busy and they don’t know what resources are available to the patients. … Most doctors don’t have that at their fingertips,” he says. “Caregivers feel so overwhelmed registering the information that they are given at the time. They need a helper present to help interpret or replay the circumstances.”

Honig sees social workers as valuable members of a care team, serving as information facilitators, therapists, and assessors. They can help caregivers fully process these dialogues; learn about community programs, appropriate activities, and financial solutions; and provide psychological support. In general, he says professionals rely on social workers to share information that may not be evident to them—to be “the doctor’s eyes and ears of what’s happening in the home environment.”

For example, a tearful spouse, who after building rapport with a social worker, may divulge that her husband’s recent combativeness resulted from a delusion that she’s having an affair. This caused him to stop trusting all women, even becoming aggressive in the company of female aides. A social worker could alert the care team and request only male caregivers and also educate his spouse about techniques that can help pacify him in her presence.

By broaching complex topics and initiating discussions about possible care strategies, social workers can guide families and professionals toward improving quality of life for the individual with dementia, as well as for caregivers (see below).

Optimal communication is especially relevant in the case of long-term care. Meeting with members of a resident’s network soon after placement can help support both residents and caregivers. A 2004 study in The Gerontologist found that family caregivers who reported problems with nursing home staff focused primarily on communication issues, such as getting better information and being heard and acknowledged. It further notes that family members can be instrumental in providing historical background for residents with cognitive impairment.

Stella Mora Henry, R N , cofounder and director of Vista Del Sol Care Center in Culver City, CA, believes social workers “step in as delegators or trusted advisors. … They have the eye to see what the person could absolutely benefit from.”

Intervening between families and staff at long-term facilities may help address issues that lead to staff turnover, a potentially unsettling situation for dementia residents who are already disoriented. According to a 2009 study in the Journal of Aging and Health, conflict with family members increases staff burnout and decreases staff satisfaction. In addition, employees believe families may have unrealistic expectations of nursing home care, notes a 2007 study in The Gerontologist.

In these cases, Henry, a family caregiver herself, says social workers need to step in and humanize the situation. For example, social workers may need to directly point out to families that staff members face difficult and challenging tasks, that their efforts should be validated, and that a team approach produces better results. “I would almost guarantee that there would be a lower turnover rate if social workers were utilized more,” she says. A 2004 article in The Gerontologist notes another benefit: Improved relationships with staff of residents with some cognitive impairment in nursing homes can also result in less distressing visits by caregivers.

Social workers can play an especially critical role in making all the pieces fit when individuals don’t have the cognitive skills or focus to tell their own tales. According to Chachkes, “Families can be tellers of what makes them and, most importantly, their loved ones more comfortable, [such as] what are their favorite foods or what do they enjoy. [Social workers] help families to take on the role of the protector … that it’s alright to talk about what makes your relative more comfortable. You need to humanize that person in a medical setting.” Answers to such questions as “Why is Mr. Smith afraid of taking medication?” or “What is Mrs. Jones looking for when she starts wandering at sunset?” can be integrated into the resident’s care plan.

Chachkes witnessed the gap closing between families and staff in a case in which facility nurses had difficulty managing a resident with dementia. So overwhelmed with his challenging behavior, they found it hard not to see him as a “screaming old man” with an illness rather than a charming gentleman with a rich history and a lifetime of stories to share. A social worker stepped in, advising the wife to bring a picture of them during their courtship to a team meeting. When the wife circulated the photo, the nurses were stunned. They could see him better as the person he was, buried under the symptoms of his illness. In sending this simple message, the team was able to cope better with the burden of his care.

Building Blocks to Get the Message Across

To be an optimal messenger, keep the following strategies in mind:

• Create a team. Regardless of whether someone with Alzheimer’s disease resides in a home or care facility, it is critical to establish a team that can bring their own disciplines to the discussion. This can be the gateway to performing a thorough interdisciplinary assessment and creating an individualized care plan to maximize success and life quality.

Get trained in dementia care. Outside of general training, a social worker needs a strong foundation in disease-specific issues, such as behavioral outbursts or delusional thinking, and successful communication strategies, including validation and redirection. And then they need to pass it on. “Families want to know how does this progress, what can I expect, what kind of resources can I get,” says Chachkes. “Social workers help them understand the burden of caregiving and help them create a natural support system. They need to think in terms of how they can alleviate the burden and not feel guilty about that.”

Become a skilled listener. It is crucial to sit down with a family and assess their knowledge, strengths, weaknesses, expectations, and potential support system. Pay attention to details and ask for detailed information such as what the patient was like before the Alzheimer’s diagnosis so as to better understand the person’s life story. This is the information that can lead to an effective care plan.

Mediate. When multiple parties are involved in a loved one’s care, not everyone starts off on the same page. According to Mary S. Mittelman, D PH , director of psychosocial research and support at the Center of Excellence on Brain Aging and a research professor in the psychiatry department at NYU Langone School of Medicine, “Adult children [can] view a situation differently than a spouse, for example. The adult child may feel that Dad belongs in a nursing home while Mom promised she would never do that to him. Instead of being sympathetic, they are arguing. A skilled counselor can help such a family communicate better so that they can support one another rather than create conflict.”

Educate. Social workers should be prepared to educate family members on alternative care options and connect them to resources. Mittelman believes the “power of social work intervention” is not sufficiently recognized. “It should be made clear to the medical profession that counseling and psychosocial support by a skilled social worker for the family caregivers of people with dementia may be at least as beneficial as any drug that is currently available,” she says. According to a 2006 study in Neurology, with Mittelman as the lead author, caregivers of spouses with Alzheimer’s disease who received counseling and support intervention experienced a 28.3% lower nursing home placement for their loved ones.

Discuss the hard issues. In general, social workers involved with individuals with dementia are typically more comfortable than other professionals in discussing end-of-life care. “Don’t be afraid to take this role; don’t feel like it’s intrusive. Even if it feels like you’re plowing ahead and people seem reluctant, go forward with it. Social workers should not take a back seat. [They] need to negotiate that environment. Helping people have the right kind of conversation is important,” says Chachkes.

Advocate. A cornerstone of social work practice is advocacy. Social workers often align with their clients to help them campaign for what they believe in. In dementia care, supporting the caregiver can be just as important as supporting the client.

* Fictitious name

— Susan London, LMSW, QDCP, is a project coordinator at the Alzheimer’s Foundation of America, where she regularly responds to calls and e-mails from caregivers across the country, walking them through daily challenges and crisis situations.

Helping Caregivers Out of the Fire

Bridging the gap is an invaluable gift to families weighed down by their loved ones’ dementia diagnosis. When caregivers step back and entrust their loved ones to the hands of skilled professionals, they create room for their own emotional healing.

Among the issues to address, many caregivers feel so hopeless and lost in the battle against Alzheimer’s disease that they wind up overcompensating to the point of making poor decisions at their loved ones’ expense.

Stella Mora Henry, RN , an eldercare specialist, has experienced this situation firsthand. She describes one example in which a resident’s daughter was spending too much time at the facility and taking her mother away from activities. “In the greater scheme of things, the daughter felt it’s the only thing she could do for her mother,” Henry says. However, by not letting go of her caregiving role, the daughter was interfering in her mother’s care to the detriment of her mother, the staff, and herself.

A skilled social worker using interventions such as validation—a technique that affirms a person’s feelings—can help normalize a caregiver’s struggle. When a wife is broken because the confused, angry man in her bed is not the husband she fell in love with, a social worker can validate her grief by sending the message that it’s natural to feel helpless and devastated.

Social workers can also assist by searching for the latent meaning in a caregiver’s words since many caregivers are too submerged in their own stress and sorrow to paint a clear picture. “Social workers can help families air their feelings, share their concerns, and focus on what they need to focus on,” says Henry.

Moreover, social workers can facilitate sharing the care. According to Esther Chachkes, DSW, an assistant clinical professor, “They need to have conversations with family and other informal support systems so that the burden becomes shared. There are ways of helping families negotiate that. The caregivers have to have a life because they can’t be a good caregiver if they don’t have respite from some of the burden.”  

— SL 

For more information, visit the Alzheimer’s Foundation of America Web site at www.alzfdn.org.