As the body ages, so does the mind. With increased longevity and medical breakthroughs allowing us to stay active long into our golden years, more individuals have to face the harsh reality of Alzheimer’s disease and other forms of dementia, either directly or through someone close. It’s troubling and it’s scary, but medical professionals and therapists assure that with the right information and a bit of help, a life post-diagnosis can still be golden.

SRQ: How does the medical community define dementia? Bruce Robinson, MD, Chief of Geriatrics and Director, Medical Education, Sarasota Memorial Hospital: Dementia has a formal definition. It’s recently been changed, and it’s defined by performance on psychological tests. Specifically, dementia requires impairment in two or more domains of cognitive function—the major domains being memory, language skills and visual-spatial skills—which is the connection between the eyes and the brain, and executive function—the planning, organization and problem-solving part of the brain. Dementia means impairment, and in neuropsychological terms that’s defined by a departure from the adult means by age and sex that’s significant in two or more domains. It can’t be just one thing. If you just lost your memory, you don’t have dementia. Kathleen Houseweart, MBA, Manager Geriatrics, Sarasota Memorial Healthcare System: And the issue with dementia is that every dementia can look different. Because if you have a memory and language impairment, you’re going to look very impaired to the people around you because you can’t communicate and you can’t remember. But if you have a visual-spatial impairment and a memory impairment, people may not notice that second impairment. If you have good executive function skills, you can get organized, take notes and not everyone will even notice the memory impairment. Dementia can look very different from person to person. Kathy Black, PhD, Professor of Social Work and Gerontology, USF Sarasota-Manatee: They like to say, “If you’ve met one person with dementia, you’ve met one person with dementia.” It is an umbrella term, and it’s a constellation of science and symptoms. Alzheimer’s is the most common type, with about 70 percent—over half—and one of its biggest symptoms is memory loss, but in some of the other dementias, memory loss is not the predominant system.

How does that complicate diagnosis? Houseweart: The assessment starts with a good history, getting a lot of information from the patient and/or the family about what the symptoms have been, how they’ve progressed, looking at their medications, past medical history and then ruling out the things that we know are simple to treat, like a thyroid problem or B12 deficiency. Sometimes we take a picture of the brain to see if there’s anything rare or unusual, brain tumors or a stroke that someone didn’t notice. Then neuropsychologically measuring the things Dr. Robinson talked about and matching the patterns of that profile with the diseases that we know. What a lot of people don’t realize is that if they don’t match a particular pattern of an unusual disease, we call it Alzheimer’s. It’s kind of a default diagnosis and that’s why it’s such a big population. The question is: are there just more diseases that we don’t know about?

Do we understand what’s happening in the brain when someone has Alzheimer’s? Robinson: No. There’s a lot of work and a lot of research being done on the issue of the biology of brain decline in late life and there have been hypotheses that center around the amyloid that accumulates and occurs, but at this point in time we have really no clue of just what’s happening in most of the people with degenerative brain disease or Alzheimer’s disease, at least nothing that’s led us to the effective interventions that change the biology or natural history of that disease. Houseweart: You can see in autopsies and reading some of the literature that there are people who have the pathology of Alzheimer’s disease, but during their life they functioned fairly normally. Then we have others who may not have a lot of pathology but they were very impaired. The information is contradictory in some cases and confusing.

Are there any avenues of research that give you hope for a breakthrough in this understanding? Robinson: I’m not in the research business, but I’ve been doing this work for 30 years so I’ve seen many points in history where people thought “Oh! Here it is!” and it’s always proven untrue. You have to forgive me for being a little skeptical. For now, I see nothing that looks like a game changer. We’re all still working around the edges of a problem that we simply have yet to grasp. Heidi Brown, CEO, Kobernick Anchin Benderson: There are different medication trials as well. Robinson: That may be. My feeling is that when the cure for Alzheimer’s presents itself, if there ever is one, it’ll be outside of anything we’re thinking about right now. Black: There are four approved medications to treat Alzheimer’s. They just stave off the symptoms and become less effective as time goes on. Some people can’t tolerate them. So there are a lot of issues with the medicines, but the more promising approaches that are coming are lifestyle interventions that increase cognitive reserve capacity–higher education, occupational complexity and good aerobic activity. The brain is an organ, so cardio-vascular health matters. Creating healthier habits and building up that cognitive reserve earlier, they believe is likely to extend cognitive functioning so that you compress the period of progressive memory impairment and decline. Houseweart: In presentations that I do in the community, I talk about the magic four. You need to eat a heart-healthy diet, because reducing your vascular risk factors is important. You need to exercise 30-45 minutes almost every day. You need to keep your brain cognitively active; find things that exercise your brain that you can integrate into your lifestyle. Finally, stay socially connected. People who isolate themselves have a higher risk of dementia. Elyse Gordon, MS/CCCSCP, Director of Therapy Services, Kobernick Anchin Benderson: From a therapeutic standpoint, once the diagnosis has been made, it’s looking at environment and how you can help someone maintain their level, where they’re at, for a longer period of time–environmental changes, cues, strategies you can implement with caregivers and the people themselves to help them maintain quality of life. Brown: And allow them to be independent for as long as they can be. Houseweart: It’s a matter of good habits. Gordon: It seems so simple, but it’s really fascinating to see how simple changes can really promote good habits.
What techniques or practices do you promote as good habits? Brown: It starts on reaching people from an early intervention or prevention standpoint. Wellness. That would be some of the strategy, before someone even has mild cognitive impairment. Gordon: It’s awareness and looking at those things that promote memory and really putting it in the forefront of your mind. Houseweart: We were involved in a project a few years back and we created this mindset curriculum. The mindset curriculum was established for people with mild cognitive impairment, but it was created for patients and their partners because when it comes to that point of cognitive impairment it affects more than just the patient. If I ask you for the tenth time what time do we have to be there, by that time you’re frustrated. This curriculum wasn’t necessarily to improve memory, although there were some memory exercises and ways to focus your attention, but a big part of the curriculum was getting organized, getting into good habits and supportive communication. That’s the issue: prolonging not only the function of the patient, but also the function of the caregiving unit. Brown: And enhancing that memory reserve with a Mediterranean diet and exercise. Gordon: My theory is you can pretty much call it whatever you want, but what you have to do is push the diagnosis aside and say this is where we are and this is where we want to maintain. Houseweart: What you just said is a big deal because we’ve gotten calls over and over again saying, “We’re bringing my mom in for the diagnosis. If it’s Alzheimer’s, don’t tell her.” The reality is to us the A-word really doesn’t mean a big deal, let’s talk about what we’re going to do about it. Gordon: They know already. They know that something is different from 10 years ago, when the tasks that they used to be able do are so much harder. Houseweart: We need to destigmatize it, and demystify it in a way that people aren’t afraid to ask the question until their symptoms are so impairing that they can’t function and someone else has to step in.

When you have a positive diagnosis, what do you tell patients to expect as the disease progresses and what do you tell the family? Robinson: There really is no expectation that applies to one person. This is true more often than you might think in medicine. When we talk about expectations, whether it is about cancer or Alzheimer’s disease, we talk about very broad distributions with no peak. What it means is that I can tell you how long it will take the middle patient out of a hundred to develop severe problems, but within that hundred people, there’s someone who has that problem tomorrow and there’s someone who doesn’t have it develop ever. I can disclose what I know, but I have to admit that whatever I say isn’t likely to apply to you. Houseweart: Prepare for the worst, but then live your life. You need to be paying attention for the signs that someone has become unsafe and intervene when you need to, but the fact that you came in at 8 o’clock in the morning and I gave you a diagnosis doesn’t mean that at 9 o’clock you’re a different person. You’re the same person. Robinson: One of the tragedies is when people fail to communicate issues about their goals if they have advanced dementia. That needs to occur early. There are many people who would gladly make that period of their life shorter. On the other hand, when a family member hasn’t heard that, it’s very hard for them to make decisions. Black: It’s not doom and gloom always for the caregiver either. There are really a lot of positives for caregivers and a great sense of meaning and purpose in one’s life to provide care for someone that you love.

How do you define successful treatment? Gordon: I define successful treatment as maintaining someone’s ability to be with family if they want to or to have a program where people are enjoying a higher quality of life than they would be at home by themselves. You can’t just treat the impairment, you treat the whole family. Houseweart: What success looks like is very different as the disease progresses. Early on, success may look like helping families cope with the frustrations of the mild problems that happen. They’re not mild when they’re in your household. Then we move into the later stages and it may be helping introduce them to the supports in the community that can help them live at home longer and helping them be willing to accept those supports. You can’t necessarily measure success by independence or living at home. Success is different for everybody. Gordon: You’re writing a plan to look at the environment so they can maintain where they are. You’re doing caregiver training based on signs and symptoms. And then you dismiss yourself, when you’ve set them up to be successful. When they have a decline or a change of environment, then you get back in. Houseweart: And helping families understand what the progression is going to mean for them is important. Helping families accept outside help or other family assistance so that relationships and that opportunity to introduce care doesn’t become an anxiety-inducing event for either one of them.

If people need part-time or full-time help, how can they determine the quality of the organization? Brown: It’s important when you visit that your eyes are wide open so you’re looking at a number of things. You’re looking at the cleanliness of the building of course, but more importantly you’re looking at the residents and are their nails kept short and clean, are their clothes clean, are there any odors, things of that nature. Observe how the staff is or is not engaging with the resident. If you see staff just walking down the halls or if you’re in a skilled nursing center and there’re call lights going on and nobody’s attentive or answering, or residents are calling out and not having active life-enrichment stimulation—those are all signs that this might not be what you’re looking for. Houseweart: Most facilities have a big calendar on the wall of all the day’s activities. Look at the calendar. Look at your watch. If there’s supposed to be an activity going on, is it actually happening? If it’s not, don’t get worried, but ask someone. In my own life I may have a plan and it doesn’t go well, but I try to find other things that can happen. Brown: Speak to the residents, speak to the family members and speak to staff. Black: Those are all great general things, but there does need to be consideration of whether the facility has a specialized dementia care unit. They’re all required to train their staff on dementia care, but there are still facilities that are going to have specialized dementia units and I believe they make the difference. Houseweart: A dementia unit should have well-trained staff, enhanced activities programs and flexibility. And they need to have locked doors, unfortunately. The reality is often people with behavioral problems that can’t be managed elsewhere are put behind locked doors. They may have on paper taken the three hours of required training, but they’re not all as engaging. Some make better efforts, but we’re not there unilaterally. Some engage, some have locked doors and well-medicated people. Brown: Again, it’s worth taking your time and visiting on more than one occasion, on different times of the day. Gordon: You have to go there and feel the culture of the facility and if you or a loved one would fit in. You can have the nicest, newest, most innovative building ever, but if the staff promoting the activity doesn’t have passion, then it doesn’t really matter. ­­Brown: Often the best people to speak to is a couple, in which one of the partners resides in the memory care unit and the other is still in their own home. They’re coming every day and spending the majority of their time with their loved one and they probably have the best view of what goes on. SRQ