Dementia demystified: Answers to common questions about living with dementia

Atria Regional Vice President Jason Shott shares his expertise and firsthand experience.

March 26, 2024

9 min read

Older woman and her daughter sharing memories by looking at photos together

Alzheimer’s disease and other forms of dementia present strenuous and unique challenges for those afflicted and their families. As the baby boomer generation enters their senior years, more and more people will be diagnosed with dementia – experts estimate that there were more than 7 million Americans 65 and older living with dementia in 2020, and if current demographic trends hold, more than 9 million Americans could be living with dementia by 2030, and nearly 12 million by 2040.

Jason Shott, a Regional Vice President at Atria Senior Living, knows firsthand how difficult dementia can be for older adults and their families. His mother developed vascular dementia following a stroke.

“Like so many seniors, my mother had resisted moving to assisted living and ended up mismanaging her medications at home,” Shott says. “Trying to provide care for her after her dementia diagnosis was very challenging because, at the time, I didn’t know about all the available dementia resources for caregivers.”

He lost his mother to an infection she acquired during a hospitalization. When his father started showing signs of vascular dementia, Shott was more prepared.

“My dad had already moved into senior living, and his dementia was developing more slowly,” Shott says. “We were able to find ways to keep him engaged and he ended up living a long life in senior living.”

Shott currently sits on the board of advisors for the Connecticut Chapter of the Alzheimer’s Association and devotes much of his time to providing information and increased awareness to families dealing with dementia.

“It’s so important that you educate yourself and your family members about what dementia is and what it entails for everyone involved,” Shott says.

Below, Shott answers some of the most common questions about dementia, its progression and treatment options.

Q: After a family member has been diagnosed with dementia, what are the next steps?

Shott: The most important thing is to know you’re not alone. It really does take a village to address your family member’s needs and concerns. At Atria, we work very closely with the Alzheimer’s Association, often recognized as the national experts on the disease. They have a 24-hour hotline – that number is 1.800.272.3900. You can also go to their website for a list of myths about Alzheimer’s.

So that’s a good starting point. Once your family member has been diagnosed by a physician, have a conversation with them to better understand what the next steps are from a medical standpoint.

Finally, you want to make sure that you communicate what’s going on to your family members, to your network of peers. A lot of senior living communities provide support groups with a Certified Dementia Practitioner® that will help guide you. But the key really is to know that you’re not alone.

Q: What are the stages of dementia and what kind of timeline can I expect for the disease’s progression?

Shott: Dementia can vary from person to person, depending on habits, genetic factors, lifestyle changes and so forth. And we’ll set aside early-onset dementia since that’s a different subgroup. But for seniors, there are basically three primary stages of dementia: early, middle and late. The early stage of dementia typically lasts about two years. The middle stage can be anywhere from two to four years – again, these are averages. And then late-stage dementia can be two years or longer. Regardless of the stage, the important thing is to understand what your family member is going through and how you’re going to best meet their current needs.

Q: What are some tips for creating a care plan for a family member with dementia?

Shott: Again, I want to stress the importance of being present and enhancing your communication. Understand that sometimes you have to speak slower, listen longer, maintain eye contact and try to avoid any kind of sudden movements. Really slow down the communication process with them and be patient.

Exercise is also a very important aspect in developing a care plan. The more activities and mobility that an individual exhibits, the longer they’ll retain the use of those functions. Try to structure sleep routines as much as possible. Depending on what stage of dementia they’re experiencing, their sleep may become more erratic. So the more consistent you can be in the beginning with sleep patterns is extremely helpful.

And finally, you want to have structured calendars to make it clear what’s going to happen on a day-to-day basis. The more you keep their days structured and the more you focus on communication, exercise and establishing routine bedtimes, the easier life will be for both of you.

Q: How does care vary for different kinds of dementia?

Shott: It depends what stage of dementia the person is in and what their needs are. A lot of people want to be the primary caregiver, spending most of their time taking care of their family member, and they end up burning themselves out – we see that an awful lot. Your emotional stress and physical stress take a toll on your body and your mind, and it’s not good for you or your family member because you’re not giving your best self to them.

Hiring a 24-hour caregiver, or caregivers, for your family member is a possibility if they’re living at home. Some folks with mild to moderate dementia can also do well residing in assisted living communities. If it’s middle- to late-stage dementia and you’re seeking a safer environment, then a secure memory care neighborhood is an ideal option, which many assisted living communities offer. As the dementia progresses and your family member becomes more bedbound, they can move to a skilled nursing care environment. And then, as they reach the final stage of dementia, there’s hospice care.

Q: What treatments are available for dementia and does insurance cover dementia care?

Shott: It’s a great question because we’re in such an exciting time in terms of treatment for the disease. There are some folks with Alzheimer’s or early-onset dementia who may qualify for a new type of treatment currently in the trial stages. Certainly you should consult with your physician or healthcare partner to determine whether you qualify for those type of treatments, but this is the first treatment that really targets the plaques that are significant in the brain that affect us in terms of the disease.

These treatments are becoming more readily available. We’re educating folks on it. Doctors are getting educated. Hospitals are running trials. So there are certainly some exciting developments happening.

Medicare and Medicaid do cover dementia treatment, up to a certain point. There are several other long-term care insurance policies that may also provide treatment outside of the specific type of treatment for Alzheimer’s disease. For other types of dementia, there are medications to treat the symptoms but not necessarily the underlying cause. And there have been some mixed results in how those medications work with people. Again, you really want to work with your healthcare professional and determine what medication is right, if any. But typically those types of medications are covered under insurance.

Q: Is there a cure for dementia?

Shott: Currently there is no cure for dementia. However, there are things you can do to slow its progression. There have been successful trials of new treatments for Alzheimer’s where folks have gone into a period of remission, where their disease did not progress further.

But certainly there are a lot of things you can do to slow the disease’s progression, such as increased activities, regular exercise and maintaining a healthy diet. There are certain programs available in assisted living, memory care and senior community centers that are designed to slow the disease’s progression. We’re really trying to educate people about what they can do to be proactive and really improve their lifestyle.

Q: What is memory care?

Shott: Typically, memory care signifies a comfortable but secure environment, meaning that it’s an environment where the individual is very engaged and won’t necessarily know that the doors are locked to keep them from wandering off.

That can be in a skilled setting. It can be in an assisted living setting. It can be in your community center. The key is that a memory care environment should provide the supervised, specialized care that your family member needs, depending on what stage of the disease they’re in.

Memory care can be helpful for caregivers as a chance to relieve stress and allow them time to care for themselves. But it also provides an opportunity for an individual with dementia to be in an environment with others like them, where their behavior doesn’t seem abnormal. They’re around other people afflicted with the same disease, which can help reduce anxiety.

Q: How much does memory care cost?

Shott: That can vary depending on what area of the country you live in. On average, we think the median rate is somewhere around $6,000 a month for memory care offered in an assisted living setting, but that can vary depending on what geographic location you’re in. It can be less, it can be more.

Some insurance plans will cover some memory care costs, depending on the type of living environment. There may be local stipends that can assist. There may be veterans assistance that can be applied. There are a number of resources and experts out there that can help you navigate the financial aspects of memory care.

Q: How does a family member or spouse know when to move from assisted living to memory care?

Shott: It really depends on what stage they’re at.

We see people in assisted living who function well in the moderate stage until they develop anxiety because the people around them seem abnormal to them, or when wandering begins and we’re concerned about where they are at any given time, or if an increase in activities and structured activities throughout the day and into the evening would benefit them and keep them engaged. Those are the times that you would really think about moving somebody to a memory care neighborhood.

Q: Where can family members find Alzheimer’s dementia support groups and other dementia resources for caregivers?

Shott: The primary place you can go now is the Alzheimer’s Association’s website, which I mentioned earlier. They offer help in finding local and online support groups. They also have a 24-hour hotline number available in Atria’s communities and a lot of other senior living communities. Additionally, many senior living communities have a Certified Dementia Practitioner to provide support as well.

Also, every county across the United States has a chapter of the Area Agency on Aging, which is a nonprofit local resource that provides additional information in terms of financial support or caregiver support.

So there’s a lot of help out there. Get connected and be proactive. Please do not do this alone. It won’t benefit your family member. It won’t benefit you. It’s so, so important to have that village and that support that will help guide you through this process.

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