November/December 2016 Issue

Supporting Families of People Living With Dementia
By Molly Fogel, LCSW
Social Work Today
Vol. 16 No. 6 P. 14

Families of people living with dementia need physical, emotional, and environmental support, and social workers can provide resources, guidance, and encouragement in stressful situations.

Social workers can be a great source of support for individuals living with a variety of circumstances. A social worker is a jack-of-all-trades: an advocate, a mediator, a counselor, and so much more. The breadth of skills social workers have translates easily and provides myriad opportunities for work that is challenging, engaging, and inspiring. Often, one thinks of social workers in the context of family therapy or substance use; however, a less discussed—but much needed—area in which a social worker can be an ideal source of support is dementia care. When a family member is diagnosed with a dementia-related illness, there are so many feelings, needs, and concerns that arise. Among these are the worry and stress that come with knowing that a loved one has been diagnosed with any illness—let alone, an incurable one. Family members may also experience feelings of grief and loss—mourning, for the person the individual was before the illness set in. And there can be feelings of helplessness, anger, and every other emotion on the spectrum. Including a social worker as a part of the care team can make a world of difference.

A Peek Behind the Curtain
To understand how social workers can support families living with dementia, it is important to have some insight into what dementia is. Dementia is not a disease; rather, it is an umbrella term describing a range of symptoms often seen with a cognitive impairment. Its impact can be seen in memory, judgment, motor skills, communication, and mood. Dementia is caused by damage to the brain cells, which interferes with the ability of brain cells to communicate with each other. When brain cells cannot communicate normally, thinking, behavior, and feelings can be affected. Dementia is progressive, which means the symptoms gradually get worse over time. How quickly dementia progresses varies greatly from person to person. There are a variety of types of dementia, including Alzheimer's disease, which accounts for 60% to 80% of cases. Vascular dementia, which often occurs after a stroke, is the second most common form of dementia. Other forms of dementia include frontotemporal dementia and Lewy body dementia.

Because of its progressive nature, dementia impacts families in a variety of ways. There are the more obvious changes—such as forgetfulness, difficulty completing once-familiar tasks, and changes in decision-making abilities—that the illness brings about. Those, alone, can be difficult to see in a loved one. In addition, dementia can impact the individual's ability to communicate verbally and because he may no longer be able to communicate his needs verbally, he may attempt to communicate them through behaviors, which can be difficult for family members to understand and process. A social worker can help the family play detective and discover what unmet need might be at the root of a certain behavior.

For example, it can be easy to assume an individual with dementia is "being difficult" if he or she pushes the family member away when prompted by touch to accompany the caregiver somewhere. But the reality of the situation may be that the individual with dementia simply isn't feeling well or is uncomfortable or in pain and unable to express that verbally.

Examining what the person may be trying to express can be instrumental in improving care and reducing stress for both the individual and the caregiver. Triggers can be categorized as emotional, physiological, or environmental. For example, an individual may be feeling frustrated—perhaps he can't find the correct word to express himself—and as a result, he may strike his care partner out of frustration. Similarly, someone with an infection may present as increasingly lethargic with limited energy to engage in his normal activities. Environmental triggers, such as overstimulation, may be present in a crowded restaurant or lunchroom, and instead of expressing the difficulty in managing this high level of stimulation, a person living with this illness may stop eating lunch, or refuse to go out for meals. Slowing down and getting a sense of what the type of behavior being exhibited, and what the root cause or feeling behind it may be, can improve the ability to help meet an individual's needs.

Family Dynamics
To best support family members whose loved one has a dementia-related illness, it is vital to understand the family dynamics involved. An awareness of how the family is organized, including roles, rituals, and boundaries can be helpful in promoting the well being of the family and the happiness of its members. Roles identified in families with substance use or chronic mental health issues are also seen in families dealing with a chronic medical illness, such as Alzheimer's disease. Specifically, a primary caregiver or spouse may help the individual living with the illness with everything to the point that the individual doesn't have to think for himself or use abilities that are still present.

Another family member, often the oldest child, may take on everything for the primary caregiver. This individual will seek to overachieve and be hyper-responsible, and he will ensure that everyone knows it.

Another family member may choose to stay off to the side, recognizing that for him, keeping a low profile is the best way to cope with what is happening. By keeping to himself, the person in this role often feels unimportant and unnecessary in the care process.

Other family members, often the youngest children or sometimes grandchildren, are seen as a distraction and source of amusement, and can keep the family from focusing on the issue at hand. They also remain sheltered and protected, often upsetting the other family members for not having as much responsibility.

As social workers, we need to understand who plays what role in each family, and how this keeps the family functioning—whether in an adaptive or maladaptive manner—in order to determine interventions that can best assist the family and determine the course of care.

Another component to consider is recognizing the boundaries that are present. Boundaries are the limits a family sets with one another and the outside world. Getting a sense of whether or not the family is open and flexible to new experiences and relationships will be helpful as things continue to shift during the course of the dementia-related illness. Because there are so many unknowns with dementia, knowing where the family stands in terms of their willingness and flexibility is key. Understanding how a family protects each other and their "secrets" will also inform the care a social worker provides as well as interactions with the family and barriers that may arise. Old family issues, challenging dynamics, and preexisting tensions can easily resurface, particularly when a family is strained by stress and illness. Tensions become particularly high when the family must come together to make critical decisions as the disease progresses. Be sure also to note the relationship among siblings, which can come with a long, complex history. Issues with aging parents can bring out the best and worst in sibling relationships. A social worker may find that old sibling rivalries for control or attention surface.

After identifying a family's roles and boundaries, the social worker should focus on learning how the family communicates. Are they good communicators? Do they understand each other? Do they truly listen to one another—hearing each person's concerns, fears, stress, and emotions? Are they willing to connect for the common cause and care of their loved one? As social workers, a large part of our role is understanding the family's communication style and helping its members meet their own needs, while not losing sight of the individual living with dementia.

Effective Communication
Teaching a family how to communicate its feelings effectively and listen to each other's concerns can be challenging. A great starting point is to check ourselves and our own methods of communicating. If we as social workers are not effectively communicating, we are unable to best assist and attune ourselves to the families we are working with. Be aware of your tone of voice and the rate at which you speak. If a family is yelling, do not try to match them. It is also important, as social workers, to harness our cool, calm, professional selves, no matter how frustrated we may get or how much a family situation may escalate. Additionally, be mindful of body language. What does your body language say about you? Are you open and willing to receive whatever is brought your way? Do you make eye contact? Does your body show that you are there and ready to listen?

When we think of listening, it's important to recognize the difference between listening and hearing. Hearing is like what we remember of the teacher in the Peanuts cartoons: All that is heard is the noise, not the words. Hearing is simply the act of noticing sound and takes no effort. Barring any impairment, hearing simply happens. Listening, however, is something one consciously chooses to do. As social workers, we need to want to listen, and recognize that the families with whom we are working want to be heard. There are three main listening skills associated with effective communication. They are as follows:
• attending: giving physical and mental attention to another person;
• following: engaging with eye contact and using unintrusive gestures (e.g., nodding of head, saying okay, or asking an infrequent question); and
• reflecting: paraphrasing and empathizing.

As part of the care team, the social worker must not only recognize what is happening in the family but also make sure all that is swirling about centers on the individual living with the illness. After all, that is what brings the whole picture together. Person-centered care and collaboration need to be constant, anchoring the family to the individual living with the illness and helping the social worker to reel things in when they seem to get a little lost.

Putting It Into Practice
There are a number of ways in which social workers can support families living with dementia. As a care coordinator, a social worker can link families with doctors and communicate between providers to ensure care is consistent and that everyone remains "in the loop," all the while linking them to additional care and resources. Such resources can include legal and financial planning, respite or adult day programs, and referrals to local health care professionals, assisted living facilities, and skilled nursing facilities. The social worker can also serve as an advocate, helping families to understand the needs of their loved one and ensure they are able to get the best possible care and support. The social worker is the educator, the debunker of myths, the shoulder to cry on, and the listening ear.

In addition, a social worker can be a neutral and impartial point of contact for family members. Many times, because of various family dynamics, a person might not feel as if he or she is being heard or may be reluctant to suggest a care approach. A social worker can serve as a sounding board and can help the individual work through concerns or stresses.

Furthermore, it can be helpful for people to speak with someone who just "gets it," who can empathize with the fact that the caregiver has had a horrible day at work, was late picking up their child from soccer practice, got home to a stack of bills, and just can't answer the same question the individual with dementia has asked for the 20th time in the last hour. A social worker can be the person who sits and listens, allows the caregiver to vent frustrations, suggests possible coping strategies, and checks in with the caregiver to ensure he or she is caring for himself or herself.

To do all of this most effectively, it is important for social workers to have an understanding of dementia-related illness. For many social workers, a focus in gerontology or dementia care never even enters the consideration set. Areas such as family therapy and substance use have a greater pull. And yet, our aging population continues to grow, with some 10,000 baby boomers turning 65—the at-risk age for Alzheimer's disease—every day, so it is certainly a field in which there is a great need.

Although many social work schools don't fully incorporate aging into the curriculum, some do offer a gerontology focus or concentration. Social workers interested in working with this population can continue to hone their skills and expand their knowledge of continuing education offerings from sources like NASW and organizations including the Alzheimer's Foundation of America, whose training program has been recognized by NASW as a source of six continuing education contact hours.

Supporting families living with dementia can be rich and rewarding work. Social workers can help the individuals living with the illness and their families work together to ensure meaningful living. There is so much more that families can do than just parking their loved one in front of the TV and thinking it doesn't matter. We can lead the charge in helping to dispel the stigma that surrounds working with this population. It just takes a willingness to commit to a path less traveled.

— Molly Fogel, LCSW, is director of educational and social services at the Alzheimer's Foundation of America (AFA), a nonprofit organization that unites more than 2,600 member organizations nationwide in the goal of providing optimal care and services for individuals living with dementia and their families. For more information, call AFA's national toll-free helpline at 866-232-8484 or visit www.alzfdn.org.