Share ThisIn our Ask a Doc series, we sit down with physicians and other clinical experts, including those at Allegheny Health Network (AHN), for a chat on an important health topic. In this interview, we explore questions about dementia and caregiving with Lyn Weinberg, MD, director of AHN’s division of geriatrics.
Globally, dementia is the seventh leading cause of death and a major cause of dependency among older people. It has a profound impact on relationships and families, and the Alzheimer’s Association notes that twice as many caregivers of people with dementia report significant emotional, financial, and physical difficulties compared to caregivers of people without dementia.
In 2022, Allegheny Health Network received a Henry L. Hillman Foundation “Healthy Aging Challenge” grant to establish the AHN Aging Brain Care Program and Dementia Super Network. The program for people with dementia and their caregivers is led by Lyn Weinberg, MD, director of the division of geriatrics, and Angela Kypriotis, MSW, MCSW, director of extended care teams, within the AHN Primary Care Institute.
In her work as a geriatrician, Dr. Weinberg says she has long seen a need for a program like this and calls the opportunity to build one “a dream come true.” She took time to talk with me about the program’s approach, and also more broadly about caring for people with dementia and helping their caregivers.
Emily Laubham: Is dementia just “part of getting old”?
Dr. Lyn Weinberg: No. A lot of things can happen with aging that many people, even health care professionals, mistakenly think is “normal,” and there is nothing normal about dementia.
Dementia, an umbrella term that includes Alzheimer's disease, refers not just to memory loss, but to cognitive and functional decline. In other words, it impairs a person’s ability to do everyday things. Rather than just part of aging, the level of loss and decline we see with dementia is attributable to an underlying disease process. In some ways that’s good, because it means there are things we can do or discover that can prevent or treat the causes of the disease.
Emily Laubham: What early warning signs of dementia should loved ones watch for?
Dr. Lyn Weinberg: The earliest signs could be things like repetitive speech, asking the same question repeatedly, short-term memory loss, and missing appointments or deadlines. When it comes to functional decline, it’s about everyday activities like getting dressed, eating, walking and bathing, but we don’t usually see a decline in those at the early stages. Instead, we may see decline in what we call instrumental activities of daily living — higher level things like driving, managing medications and finances, and shopping.
Emily Laubham: If you notice some warning signs, what are the next steps?
Dr. Lyn Weinberg: Always start with a person’s primary care physician (PCP). The most important thing is taking a good history and reviewing medications that could be contributing to a decline. There are also basic cognitive tests that provide a lot of information. It’s also important to assess what a person’s level of support is, so, if you’re a concerned loved one, plan to attend initial appointments with them.
Emily Laubham: Can you talk about navigating situations where an individual and family member or potential caregiver aren’t aligned on whether something is wrong?
Dr. Lyn Weinberg: That happens all the time, and it can be really difficult. We often see a situation where a family member or caregiver notices a change in someone’s behavior, but the patient doesn’t. I also see situations where one family member recognizes something that maybe another family member doesn’t want to face. This all reinforces the importance of having a strong relationship with the doctor — sometimes, these conversations need to happen over multiple visits.
The flipside is a patient who comes in and thinks there’s something wrong, but their family doesn’t. That may be a family member not wanting to think about a problem, but often there’s something else at play, such as depression, anxiety, or stress impacting cognitive function.
Emily Laubham: So symptoms of depression could look similar to symptoms of early dementia?
Dr. Lyn Weinberg: For sure. In geriatric training, we learn the three Ds — dementia, depression, and delirium — all of which can involve cognitive decline. Dementia also increases the risk of depression, especially as people become aware of certain deficits, so it can often be a swirl of symptoms that overlap.
It’s important to understand that all three Ds can overlap, but there are different ways to treat them. Delirium is when someone’s cognitive functioning declines acutely in the face of another medical issue or something like a hospital stay. In that case, it’s important to identify the underlying illness or medication exacerbating the issue. For depression, we often use antidepressants, as we would potentially in a younger person. And we do have medications for dementia that can help modify the course of the disease, but unfortunately they’re not miracle drugs. There are new drugs being developed that will hopefully be even more effective in the future.
Emily Laubham: What are some of the challenges in identifying and treating people with dementia?
Dr. Lyn Weinberg: As is true with other diseases, we can often do more to help if we identify dementia before it gets to an advanced stage. Obstacles to early identification can include not understanding or ignoring early warning signs, and on the provider side, time is a huge barrier. During a patient visit, especially with older patients, PCPs may be focused on existing conditions and medications and don’t always have time to ask questions and look for signs that could indicate early dementia. To help with that, one thing we’re advocating for is to use an effective dementia screening tool so that, theoretically, every patient above the age of 65 would be screened once a year during their annual wellness visit for Medicare.
Involving PCPs is important both for early identification and for managing treatment. There aren’t enough specialists to handle every dementia patient. At AHN specifically, we are working on a care model for patients with dementia that helps PCPs understand their resources better, as well as how and when to use them. The goal is to empower PCPs with the right tools and resources to manage dementia and then encourage referral of more complicated patients to specialists when appropriate.
Emily Laubham: What is the focus of the AHN Aging Brain Care Program and Dementia Super Network?
Dr. Lyn Weinberg: The initial funding is for one year, so we’re starting small, leveraging an evidence-based model designed by a team of experts from Indiana University. First and foremost, we are focused on caregivers and people with dementia who want to stay at home.
We’ll be educating and empowering clinicians as well, particularly PCPs, both in doing assessments and knowing what resources are available. Part of our work is to bring everything together in ways that support patients and families more effectively, so we’re coordinating resources and experts throughout the community, including clinicians, independent groups, faith-based organizations, the Alzheimer's Association, and others.
Angela Kypriotis, our co-lead and director of extended care teams, is the one who identified the model we’re using and really solidified the vision I originally had.
Emily Laubham: There is a coordinated care team approach?
Dr. Lyn Weinberg: Yes, there is a care team made up of a behavioral health consultant, community health worker, and social worker, all with special training to deal with dementia. They are available to caregivers to provide hands-on coaching to help them problem-solve for everyday challenges.
The program will also liaison with an expert team, including geriatricians — myself and my partner, Dr. Alison O’Donnell — and two neurologists who specialize in dementia. While we’re not always going to be the ones seeing the patients, we’ll be available for troubleshooting, questions, and advice.
Emily Laubham: Why is part of the focus on people who want to remain at home?
Dr. Lyn Weinberg: When you ask older adults what matters to them, it’s usually about being independent at home. If we can support that, including by helping their caregivers, we can make their quality of life better and also relieve some of the stress and cost that comes when people spend more time inside a health care system.
Emily Laubham: Who are the caregivers and what are some of the challenges that come with caregiving for someone with dementia?
Dr. Lyn Weinberg: We often have adult children taking care of their older parents, and some really complicated feelings can come up around that. It becomes especially challenging when the caregiver is in that sandwich generation where they’re simultaneously caring for a parent and their own children. We also see a lot of spouses caring for spouses. Sometimes, we see nontraditional caregivers like nieces, nephews, or friends. Statistically, caregivers are most often women.
Being a caregiver for someone with any disease process can bring enormous physical, emotional, and financial burdens, although it also may be one of the most important roles they ever have. But it can be especially difficult to provide care to someone with dementia; not only is that person declining physically, they're losing their memories and autonomy. In a way, caregivers go through the grief of losing someone while they’re still alive.
Emily Laubham: How will AHN’s program help caregivers of people with dementia?
Dr. Lyn Weinberg: Caregivers have adverse health effects that are out of proportion to people who are not caregivers, including more hospitalizations and more ER visits. So, for starters, we want to focus on helping caregivers understand how to attend to their own physical and emotional needs. For example, as part of our program, we recommend that caregivers develop a crisis plan in case of emergencies and coordinate eight hours of time off each week. It may sound impossible to them at first, but part of our goal is to connect people to resources so they can actually do this.
In general, we don’t have the same level of resources in place for caregivers of dementia as we do with other diseases. When someone gets diagnosed with cancer, they tend to get directed to robust services like social work and nutrition. With dementia, caregivers usually have to seek out help, and providers aren’t always in tune with what’s available. Reaching out and finding help are made even more difficult by the stigma around dementia, and the marginalization of elders, especially those with dementia, throughout our society.
Emily Laubham: What advice do you have for caregivers as they try to communicate with someone with dementia, especially in the more challenging moderate or severe stages?
Dr. Lyn Weinberg: Sometimes, people with dementia are experiencing behavioral or psychological symptoms that make communication very difficult. They may lose the ability to understand verbal communication, and sometimes they may perseverate on certain things that make it harder for a caregiver to communicate effectively.
Emotional regulation is important. If the caregiver gets upset or frustrated, it will make communication even harder. It helps to connect with other caregivers, perhaps attending a support group once a month or attending something like the large-scale conferences we’re planning to host. Caregivers need to vent. They need to cry and have their own emotional outlet.
Emily Laubham: When it comes to communication, is there value in leaning into your loved one’s reality versus trying to “correct” their delusions?
Dr. Lyn Weinberg: That’s a great question. I advocate for leaning into the reality of the patient’s experience, although it can be hard because it sometimes puts caregivers at odds with what they would normally think is the right thing to do.
It can be a struggle to feel like you’re altering reality or telling lies in order to lean into a loved one’s reality, but it’s important to that overall emotional regulation to not communicate with corrections or arguments. Try to stay with someone exactly where they are, or gently redirect, but don’t try to force them into your reality.
Dr. Lyn Weinberg has been a geriatrician with the Allegheny Health Network since August, 2013, and is now the director of the geriatrics division for AHN Primary Care Institute. Specializing in Geriatric Medicine and Internal Medicine, she is affiliated with West Penn Hospital, Allegheny General Hospital, Forbes Hospital and Temple University Hospital. She graduated from the Jefferson Medical College of Thomas Jefferson University in 2009.
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