When a loved one is diagnosed with dementia, it affects the whole family. Beyond visits to the doctor, the guidance and expertise of a social worker in dementia care can help people living with dementia and their families navigate its challenges and maintain quality of life post-diagnosis.
“Social workers who specialize in care for older adults often spend their careers in the mud with individuals diagnosed and their support system. We meet them at many different tough stages where their loved one may have a new diagnosis, might require placement in skilled nursing, or for end-of-life care through hospice,” explains Brandi Hackett, a Licensed Master Social Worker (LMSW) and Certified Advanced Social Work Case Manager (C-ASWCM).
Brandi has been working as a social worker for more than 17 years. She has been supporting older adults, their families, and their care partners. While the bulk of her career has been spent providing care for individuals over 50 years old – she has had clients as young as the 30s to over 105 years old.
As the manager of support services for the Lewy Body Dementia Association (LBDA), Brandi co-manages over a hundred of the organization’s support volunteers. She also manages the LBDA’s helpline called the Lewy Line – and is often the voice responding to callers.
Unraveling the knots
Helping families as a social worker in dementia care requires a special skill of listening and finding ways to understand what their needs can be at that time. “We act as interpreters, mapping out their concerns on a big whiteboard and then attempting to translate these details into solutions that can assist them in accessing the support needed,” Brandi shares.
Finding support can be critical because stressful situations can make it increasingly difficult to process and access information. “You have to learn what may be vital for them know now while sprinkling in a proactive approach containing what they might need that may make their lives less chaotic.”
Sometimes, the solution might be completely different than what clients had expected. “They’ll call us and have this specific need. As the call progresses, the original need isn’t even on the table anymore. We’re discussing something completely unrelated to what they called about. Sometimes people don’t know what they don’t know. Or, don’t realize the solutions they might have access to for the needs they are having at that time.”
A diagnosis of dementia may increase pressure in a support system, Brandi shares. “It is often helpful to reassure families that it is okay to not know how to do this. I would say, ‘Have you done this before? Should you know something well that you have never done before? Do you have that expectation in the rest of what you deal with in your life?’”
She reminds clients that it is okay to feel lost and need guidance. “The closer a difficult situation is to you as a person, the harder it can be to think clearly. Society expects us to be able to know all, do all, and be all – but in reality, all of us are vulnerable.”
Weaving a blanket of care
The piece that Brandi loves most about her role is being able to connect clients to the right tools, people, and resources. “My role is to spread that net of support wider than what I, as one person, can provide. These can be other social workers, nurses, chaplains, music therapists, neurologists, support group facilitators, and others in the space. It might be an amazing service being provided. Or, an educational article that can be helpful.”
While it sounds a lot like networking, she says the approach is slightly different in this context. “I like to call it net-weaving because it’s almost like weaving a blanket of care. It’s more than just remembering names or handing out someone’s business card. It is important to know the what and why behind what these colleagues do. I love net-weaving the most because the larger net of support best helps the families that we serve.”
“…What drew me into social work [is that] even in the hardest of our moments as humans, you can still give and receive love.”
A helping profession
Having been raised in a family of helpers, Brandi had known her whole life that she was meant to be professionally serving others.
“My parents would usually be the ones to jump in and provide support. They’d be at every funeral and would be the first to help our neighbors,” she says. “I learned early on as a child that we’re part of a bigger village; that it is our responsibility to take care of our fellow humans.”
Upon entering college, Brandi was determined to pursue a helping profession. She first decided to take up biology as a pre-med degree. “When you think about helpers, you think about doctors and nurses. And then I realized the hard sciences were not exactly my passion. I was more excited to learn about the people part of those fields.”
She made the shift to psychology and sociology, where she was mentored by her professor who was a social worker. “The more I got to know her and the options within this field, the more I became interested in what she did. It wasn’t long before she pulled me aside and said, ‘You’re a social worker. I don’t even know why you’re fighting it.’”
Pursuing Social Work
In pursuit of her career as a social worker, Brandi continued her education at the University of Georgia. There, she took up a Master’s Degree in Social Work. “At first I thought I was going to work with children. But when I worked with older adults in a nursing home setting, I fell in love with the population.”
She spent a full year internship in medical oncology serving people in cancer care – many of whom were older adults. “Being in medical social work still allowed me to be in the medical field, but I was still very much in that service space where I could help families in a way I knew I could.”
Many educational backgrounds may lead to work in the field of social services. However, social work itself is a profession that requires formal education in Social Work. It also entails an empathetic and compassionate disposition, a specific set of skills, and strict adherence to a shared code of ethics.
A lighthouse on the shore
As a social worker in dementia care, Brandi often meets people at a dark time in their lives. “The best thing we can do, and the way I describe what we do, is that we are flashlight holders. We show families what they may need to focus on in those moments. We also gently guide them along a path that might be good to follow.”
The goal for any social worker, Brandi says, is to make clients feel heard and supported. “We might not be able to fix their lives, but we can give them real support, comfort, and understanding.”
This, Brandi says, is what motivates her the most. “I think that’s what drew me into social work: that even in the hardest of our moments as humans, you can still give and receive love.”
However, carrying out this level of care often requires a lot of strength and the firm establishment of boundaries, she explains. “It can be very hard on us because we are often also vulnerable. As many times, their concerns might reflect on our own.”
Drawing the line
Often, she says, the division between us, the social workers, them, the clients, tends to blur in their work because of our shared humanity. “It tends to be a we, more than anything. We do have to have boundaries to protect ourselves as professionals. And, there needs to be clarity in roles because we’re not their loved ones. We are social workers who are serving our clients.”
Establishing one’s limits, she says, is a learning curve and will remain a constant goal for any social worker. “While you can give a heck of a lot, you have to be able to wake up the next day and do it all over again. I always have to be conscious that I can’t fix everything. I’m going to be with them only for a little amount of time. I also have myself and my family to care for outside of this role.”
Brandi wrote about her struggles early in her career with setting boundaries in a case example for her peer-reviewed article titled Compassion Fatigue, published in the Journal of Certified Senior Advisors. Her decision to share her own story was initially met with resistance by the article reviewers.
“I was told it needed to be someone else as the case study. I asked them, ‘Why?’, and then was told to pretend it was someone else or to make it seem less difficult. But I said, why can’t someone that has been through compassion fatigue still be okay afterward? Why can’t people see that it can be the same person who wrote the article? We don’t have to show people a perfect hero.”
Dispelling misconceptions
Brandi’s experience as a social worker in dementia care has also shown her how much dementia can be misunderstood.
“Those diagnosed and their supports tend to think of it as a life sentence. They might also think that everything that follows has to be miserable,” she explains. “But we also can show them that it’s possible to have quality of life and have great relationships and experiences – even with this diagnosis.”
To help people understand the level of care that might be needed by a patient, she often tells clients to describe their worst day and not their best day. And with the fluctuations, Brandi adds, people with LBD may have days, hours, or moments when symptoms are present but less obvious. But, care may be needed to cover the higher levels of need in those more difficult moments – not the easier ones.
“Whenever something seems off about their loved one, a family member might attribute it to a lack of sleep. They might also assume it’s a head cold, fatigue from overworking, or anything else that could be gone in a day,” Brandi says. “No one ever wants to consider that there may be underlying neurodegenerative disease causing the changes seen.”
People might also forget that dementia does not just affect older adults. This can lead to roadblocks in the diagnosis of early onset dementia, Brandi explains. “Because dementia is more commonly diagnosed in people older than 65, healthcare providers may look at all other possible issues with someone who is younger. They might not consider neurodegenerative diseases as an underlying cause.”
In the case of Lewy body dementia, patients may not be easily diagnosed. This is because its symptoms are commonly overlooked or misunderstood as part of a potential centralized diagnosis. “LBD can manifest in symptoms like movement issues similar to Parkinson’s, issues with sleep, cognitive changes, etc. Memory loss, commonly understood as the main dementia symptom, may present less prominently in the initial stages in LBD. This can be especially confusing because many associate only memory loss with cognitive changes.”
People, not cases
As a social worker, Brandi also helps clients build a more person-centered approach to care. “In every diagnosis, medical providers look at tests, scans, appointments, and medication. But these details are only part of the rest of what people need with a diagnosis like this. People need information on how to support and handle those every day needs following diagnosis too.”
Every diagnosis of a type of dementia, every progression of symptoms, and every presenting need may be different. “While similar patterns will arise, there will always be variations in background, culture, socioeconomic status, gender roles, and even emotional baggage,” she explains. “Supporting people, especially as a social worker in dementia care, is about meeting them where they are and helping them through their unique personal journeys.”
While a social worker in dementia care may sometimes spend a lot of their work in logistics and coordination, Brandi also looks to additional extensions care like LBDA’s support network to connect people to support outside of their coordination needs.
“Our lived-experience volunteers and offered support groups remind me daily that there’s real humanity involved in this and that you have individual people and their support systems whose lives have been changed by dementia,” she says. “It’s important to remember the wholeness of each person and to wrap them in as much support as we can.”
While meeting people in this space frequently can expose her to the raw and fragile parts of their humanity, Brandi says it is always an honor to be sitting with them in a difficult time in their lives.
“Louise Aronson said it so powerfully in her book, Elderhood: ‘The most difficult part of patient care of any kind, is dealing with the hardest parts of what it means to be human.’ Helping families through tough stages can be the most difficult part of our job as social workers, but it’s also the most rewarding,” she concludes.
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