A Conversation With Shannon Braun, The Director of ERS's Center for Memory Support & Inclusion

Since 1951, Episcopal Retirement Services (ERS) has focused on providing a safe and welcoming environment for our residents, visitors, and team members. Our newest step along this journey is the new Center for Memory Support and Inclusion.  

The Center is part of a three-year, fully-funded pilot program designed to support seniors living with dementia — across not only ERS’s retirement communities but also the greater Cincinnati area. It combines the resources of ERS, UC Health, the Alzheimer’s Association of Greater Cincinnati, and other healthcare and aging service providers to improve memory care on a community-wide scale.

Shannon Braun joined ERS in 2020 and leads The Center for Memory Support and Inclusion as its Director. We recently sat down with Shannon to learn more about the Center, memory care, and caregiving during the COVID-19 pandemic. 

“
As a social worker, I’m always an advocate first.
”

— Shannon Braun

Q: Now that caregivers are likely spending more time with their older loved ones due to the pandemic — how can you tell if someone needs a dementia screening? What are the warning signs?

SHANNON: For starters, it’s important to note that there are many different types of dementia, most of which are progressive and some are reversible. For example, severe depression or delirium can mimic dementia symptoms. 

It’s crucial to narrow down the underlying cause of your loved one’s cognitive changes, especially now with COVID-19. So, you have to ask yourself, “Are these changes because my loved one is out of their normal routine? Are they not getting enough water or not getting outside enough? Is the decrease in social interaction affecting them?” There are many reasons why someone could decline in memory or give the perception that they're declining in memory because of what's going on right now. 

There are ten warning signs that someone is developing dementia, including decreased judgment, personality changes, and memory loss. If you notice symptoms in your loved one, they should be assessed by a doctor — whether that's a geriatrician, neurologist, or neuropsychologist. There are many avenues in which to obtain an assessment.

The need for an assessment also brings up another important question: when do you know that it's time to have someone come into the home and help you care for your loved one? Similarly, how do you know when it’s time to place your loved one in a memory care community? I think a lot of that depends on the person who is the care partner.  

Sometimes it's easier for non-family members to offer support with activities like bathing. People with dementia are often more agreeable to certain types of daily living assistance if it comes from a professional. I think that’s sometimes surprising for people to hear or understand.

Also, when you're an at-home caregiver, you are the cook, the cleaner, the activity director, the personal care attendant — all of these different roles. And ultimately, it really can take a toll. If you allow yourself to be the care manager and help coordinate your loved one’s professional senior care, it can benefit all parties.  

Memory loss and dementia is a long, slow progression, so you should regularly reevaluate your situation — otherwise, you might miss the warning signs.   

Q: As caregivers, the need to pivot and reevaluate during the COVID-19 pandemic has become even more critical. Our staff members have experienced that, as well as family caregivers. Do you have any tips? 

SHANNON: I think it's always hard to ask for help. Period. Especially for care partners and family caregivers. 

The pandemic impacts all of us — but, for some, the impact is catastrophic. The peeling away of support that caregivers relied on before is unimaginable. And people who would have chosen to make a nursing home placement or an assisted living memory care placement are deciding between, “OK, I can move forward with that choice because my loved one desperately needs it. But that would mean I am saying goodbye, and I don't know when I'll see them again.” 

So, I think reaching out is vital. You are holding on to your support community — whatever that looks like for you. Support groups have been instrumental for so many people now. Most of them don't happen in person anymore, which is such a loss. But if you can challenge yourself to get comfortable with the virtual aspect of online support groups, there's still benefit there.

Also, have a list in your mind of things that would be helpful so that if someone asks, “How can I be supportive?” you have concrete answers for them. Often, people help in ways that are easy for them or ways they believe to be helpful. 

I had a client once whose neighbor knew she was caring for her husband. Her neighbor came over and said, “I'm going to help you. I'm going to do all of your yard work. You don't have to worry about your gardening.” 

The client was so appreciative of her neighbor’s offer — but gardening was the one thing that brought her peace and calm. That was her self-care. So, she almost gave up stress-relief. And so, what does she do? Does she turn down the help? Does she get the courage to say, “actually, that wouldn't help. But if you could make me a meal, that would be great”? 

Have things in your head on the off chance that someone will ask how they can help. Also, let them help. People are looking for ways to feel connected and to feel purposeful right now, so it allows them to do that. 

Q: Let's talk a bit about one of the support systems that have been peeled during the COVID-19 crisis. Many people in the Cincinnati area felt supported by the memory cafes you were instrumental in starting in the public libraries. Five or six were operating when COVID-19 shut everything down. Has the program been able to continue in a virtual or outdoor setting?

SHANNON: The Harrison branch is continuing by offering virtual memory cafes. Michelle Elliott is the branch manager at the Harrison Library, and she's been so excellent and so dedicated. She understands the importance of the memory cafes and social connection. What we’ve been doing, which has been unique, is turning to storytelling. We'll have a topic like a vacation and the attendees email her pictures beforehand. Then, during the virtual meeting, Michelle will pull up Bob and Sally’s snapshot in Alaska on a train ride. And then, both Bob and Sally will be on the Zoom call and together will share the story. It's good for them because there's a visual, and it's a shared story. So, the person with dementia isn't put on the spot for coming up with details. And even if, let's say, the spouse is the one telling the story the whole time, it can still be a reminiscent and engaging process.  

Q: Can you explain the “Improv” technique of “Yes, and…” how it is used to enable caregivers to deal with challenging behaviors and situations?

SHANNON: “Yes, and…” is an attitude. If you approach any situation with a "Yes, and…" attitude, what you're doing is you are agreeing with the situation and adding to it. 

Dementia is difficult because it challenges our perception of reality. If someone with dementia is having a conversation with me and telling me things that just aren't true or they're sharing a memory that we both were a part of, and their version of it just didn't happen that way, my initial instinct is to correct them. It's natural for us to want to tell the truth and to set the record straight.

When we provide someone with the simple “Yes, and…” strategy, it frames the situation for them. So, now I have a goal to work toward. My initial instinct isn't to correct but to go in. It reshapes how I'm viewing the entire interaction. Now, it doesn't matter whose version of the story is accurate. It becomes a way that I can interact with this person. We can have meaningful engagement. And it's something that people do all the time anyway. “

“Yes, and…” is a framework for making it OK to go along with their reality.  

Some people have a hard time with that. Some people say, “I can't lie to my dad. I would never lie to my dad.” Other people say, “oh, that sounds fun!” Wherever you land on that spectrum of comfortability, the improv strategy allows people the opportunity to enter their loved one’s reality. Plus, the more you do it, the more comfortable you get and the easier it becomes. 

Q: What part of your role do you find the most rewarding or that you enjoy the most?

SHANNON: Since family members are not allowed into the communities right now, it's a real honor to be with the residents. It's emotional. It's draining. It feels unfair, but that's where we are. 

The pandemic has dramatically shifted my role and the way it was intended to be. While I’m eager to roll up my sleeves and dive into the community wide dementia education and advocacy work as planned, I’m appreciative of my time working directly with residents and families at Deupree Cottages. 

Q: Speaking of, you and the Deupree Cottages team saw the need to start an informal “coffee talk” for those family members who can’t be together. So, all of the attendees are in the same boat. In your experience, have these moments helped families? 

SHANNON: Of course. We can either be alone by ourselves, or we can be alone together. And that the conversation allows families to express how lonely they feel and how this time impacts them. And even just expressing and sharing these feelings and recognizing that you're not the only person who feels that way makes such a difference. It's such a unique position to be unable to see or touch your loved one. None of us could ever have anticipated this. And, yet, here we are, and everyone's doing the best they can under these circumstances.

As a social worker, I'm always an advocate first. I think the conversations give the families an avenue to come together and advocate for their parents. And sometimes it is emotional. Sometimes the frustration comes out. A lot of times, their gratitude comes out. It's a way to express themselves and realize that they’re in it together. We all are.

Recent Advancements in Alzheimer's Research

Although June is over and Alzheimer’s and Brain Awareness Month has passed, that doesn’t mean we can’t all continue to spread awareness. We want to share some of the recent advancements in Alzheimer’s disease research. While it sometimes feels as though there is so much we haven’t done or don’t know yet, the good news is that there are people who are devoting their lives to digging deeper and pressing forward. The Alzheimer’s Association, for example, has continued to fundraise, advocate, and advance research, even during the COVID-19 pandemic. 

Research is never finished, and there are plenty more studies that can still be done related to Alzheimer’s, dementia, and other memory-loss conditions and cognitive disorders. Below, we explore some of the most recent breakthroughs in the field.

Recent Alzheimer’s Research Advancements

According to the Alzheimer’s Association, there are currently 5 drugs approved by the FDA that treat the symptoms of Alzheimer’s, but they do not yet address the underlying root cause of the disease. However, there are many drugs currently in development that aim to slow or stop the disease’s progression.

Some of these treatments are aimed at plaques, also known as beta-amyloid, which is a hallmark of Alzheimer’s disease. These treatments are designed to stop the beta-amyloid in the system from clumping together to form plaques by mimicking the body’s immune system responses.

Many people with Alzheimer’s experience destruction in nerve connections in their brains when the beta-amyloid interacts with a protein called Fyn. Research has found a drug that can turn off the body’s production of Fyn. Human trials are still underway and awaiting results, but in animals, when the production of Fyn was stopped, the nerve connections began to work again.

There are other markers of Alzheimer’s disease that treatments are looking to fight besides beta-amyloid, too. One of these is inflammation. Inflammation is particularly prevalent in Alzheimer’s patients because plaques and other Alzheimer’s hallmarks trigger an immune response that causes inflammation. As the plaques continue to grow, inflammation continues to expand, as well. 

Some researchers are looking at ways of protecting the neurons from the toxic chemicals released when the immune response is triggered. Other research is being done to decrease the amount of inflammation present in the first place. As we age, some brain cells stop growing and dividing, although they don’t die. These cells release molecules that cause inflammation. By targeting and killing these cells, treatments can stop the excess inflammation from occurring. As with the rest of these treatments, research is still underway.

Raising Alzheimer’s & Brain Awareness

Did you miss Alzheimer’s and Brain Awareness Month this year? There are many ways you and your family can acknowledge the event next June. For example, consider doing a 5K or 10K at a park with your family, and make a donation to an Alzheimer’s research organization on The Longest Day.

Another great way to honor the month is by educating yourself on the disease and knowing what you can do now to reduce your risk and that of your family. While there aren’t any proven methods of preventing Alzheimer’s disease, leading a healthy lifestyle can possibly help you reduce your risk. Don’t smoke, eat a balanced diet (Mediterranean-style is an excellent choice), be active, and address any blood pressure or cholesterol issues. 

Perhaps the most important way to acknowledge Alzheimer’s and Brain Awareness Month — both in June and year round — is by using your brain as much as you can. Do some extra puzzles in the evening, play trivia games with your family, and keep your memory active. The more you can use your thinking skills, the better.

Alzheimer’s research still has a long way to go, but there are advancements being made consistently. Research and studies are always ongoing with the hope and belief that one day Alzheimer’s and all other dementia will be ended for good. 

Tips for Making Your Home Safer for Someone With Alzheimer's or Dementia

As a caregiver for an aging parent or spouse with memory loss, safety is your top priority. You probably already take necessary precautions when taking your loved one to their doctor’s appointments or traveling to new places. But do you take those same precautions at home? 

Many Ohio caregivers and their aging loved ones are staying inside right now in accordance with the state's stay at home order to slow the spread of COVID-19. Thus, if you live with someone who has Alzheimer’s disease or dementia, it’s important to create a safe environment where they feel comfortable. Seniors with memory loss can have a difficult time orienting to their surroundings, and they might misinterpret objects and situations around them.Take this time to evaluate your surroundings and make the changes that will benefit your loved one. Make sure you look at the house through their eyes or, better yet, ask them which areas make them the most and least comfortable. Pay special attention to these five areas.  

Making Your Home Safer for Someone With Alzheimer’s or Dementia 

1. Remove Fall Hazards

Many people with Alzheimer’s disease and dementia lose some of their fine motor control. Because of this, they are more likely to trip on items on the floor.

Walk through your home and take note of any fall hazards you see, and then remove as many as possible. Common trip hazards include area rugs, wires or cords, footstools, papers, and even toys. The more you can pick up now, the safer your loved one will be.

2. Look for Disorienting Features

Dementia can impact a variety of faculties including depth perception, balance, coordination, memory, and strength. Thus, as you look at each room individually, consider all of its different elements. For example, are the walls covered in a busy wallpaper that could be disorienting? What about large, floor-length mirrors? Even glass patio doors or windows can become confusing for someone with dementia. 

Look at your carpet and see if it’s bubbled. If so, try to pull it taut or strategically place furniture to flatten it. Also, look for wheeled swivel chairs that could be dangerous and bookshelves that could topple over. Move these out of the way or make sure they’re locked in place. Finally, arrange your furniture in a way that gives a clear path for you and your loved ones to walk easily.

3. Assess the Bathroom

Do you have non-slip mats in your bathtub or shower? How about grab rails for your loved one to use throughout the room? These can be easy additions to make the bathroom safer and more comfortable for those with Alzheimer’s disease or dementia.

It’s also a good idea to move all medicines, razors, and cleaning supplies into a room or cabinet that is locked and out of your loved one’s sight. This simple step will make sure everyone is safe and protected.

4. Safety-Proof the Kitchen 

If possible, install safety knobs on your stove so your loved one can’t accidentally turn it on without realizing it. Also, you’ll want to move sharp knives and other potentially dangerous items or appliances from the area. 

Ensure that there is food out on the counters and easily accessible so your loved one won’t need to go searching through cabinets to find any. Similarly, remove any magnets or trinkets that are shaped like food — they can be easily confused for the real thing.

5. Take General Precautions

Now is an excellent time to check your smoke detectors and carbon monoxide detector, as well as the locks around your home. Install night-lights in especially dark areas so everyone can see a bit better. During the daytime, consider opening the blinds to let natural light in and make sure everything is illuminated!

Preparing a home to be safe for those with Alzheimer’s disease or dementia can seem like a  daunting project, but if you take it one step at a time, you’ll make it through easily. 

A Caregiver's Guide to Protecting Seniors from Coronavirus Investment Scams

There’s no doubt we are living in unprecedented times. Over the last few weeks, however, people across the globe have banded together and expressed immense generosity and gratitude in response to the COVID-19 pandemic. From the “Clap For Our Careers” movement in Great Britain to everyday Americans offering to buy groceries for their neighbors, we at Marjorie P. Lee have been incredibly moved by these acts of kindness.   

This generosity makes it even harder to believe that scammers are trying to exploit everyday people’s fears and uncertainty around the pandemic for profit. As with many scams, these attacks often target our country’s most vulnerable populations, including seniors. As a caregiver, there are steps you can take to protect the older adults in your life from falling for these scams.

What Types of Coronavirus Scams Are There?

So far, the U.S. Department of Justice has reported several different types of investment scams, the four most common being: 

• People or businesses selling fake cures. 

• Phishing emails that appear to come from the World Health Organization of the Centers for Disease Control and Prevention. 

• Websites and apps that seem to share COVID-19 information, but then lock your device until payment is made. 

• Fraudulent donation sites for fake or non-existent charities. 

The Justice Department has been taking action against these scams — the first being a restraining order against a website offering a fraudulent vaccine. As a caregiver, you too can take action to help the seniors in your life protect themselves and their money. 

Talking with Your Aging Loved One about Coronavirus Investment Scams

The best time to discuss these coronavirus investment scams with your aging loved ones is before they’re targeted by one. Talk with them — or, if you’re not currently in the same household, give them a call — and explain that they could receive a fraudulent message in the coming weeks. While you don’t want to scare them unnecessarily, informing them of these types of scams can make them more aware and vigilant, and therefore more protected. Explain to them the different types of scams that the Department of Justice has been reporting. 

Remind them that they shouldn’t click on links in emails from people they don’t know and if they’re unsure about something that they should ask your opinion. Many seniors who aren’t tech-savvy realize that their younger caregivers can see what’s real or fake easier than they can.

Also, tell them to hang up if they receive any robocalls. Don’t press a number to speak to someone or even be removed from the calling list — just hang up. This way they can’t accidentally put themselves on a list for even more fraudulent calls.

Finally, advise seniors to ignore any advertisements or messages about ordering vaccinations or home testing kits. These products are not approved by the FDA and will not actually help anyone who has or thinks they have the coronavirus.

Combatting Coronavirus Scams

Besides having a proactive conversation about the types of coronavirus scams and how to avoid them, another great way to combat these scams is to fact-check. Whether it’s a news article on social media, a realistic-looking email, or a financial plea from a charity, you can protect yourself and your loved ones by verifying the information first. Look for reputable sources, especially official sources like the CDC or WHO, that are sharing the same information. If you were contacted about making a donation, search for the charity, and find information about who they are and how long they’ve been established. Verify that emails are coming from reliable sources.

Encourage your loved ones to ask you before they take any action related to these types of messages. If possible, consider finding a time that you and they can talk about the most recent information about COVID-19. This way you’ll know they’re up-to-date on information and they won’t feel the need to rely on articles online or information from other (potentially fraudulent) sources.

Ensuring Your Loved One’s Safety

This is a stressful time for everyone. Caregivers may already be worried about their senior’s physical health, but now there’s an additional concern of fraud and scams. Fortunately, these steps go a long way to protecting the seniors in your life. The Justice Department and FTC have also created many resources to help you identify and report any scams you or your loved ones may find. Keep yourself aware, be vigilant, and always remember to approach seniors from a place of understanding when it comes to coronavirus investment scams.

We at Marjorie P. Lee hope you and your family are staying healthy and well during this time. 

What Are the Main Causes of Memory Loss?

Seeing an older loved one have a lapse in memory can be worrisome — but it doesn’t necessarily mean they have Alzheimer’s or another form of dementia. Memory loss is more common than you might think, and it can stem from a variety of conditions. In fact, about 40% of Americans over the age of 65 have some sort of memory loss due to age. However, only 1% will progress to dementia annually.

There are many different risk factors for memory loss, so let’s look at some of the primary causes and what you and your loved one can do about them.

Top 4 Causes of Senior Memory Loss

1. Alzheimer’s, Parkinson’s, Lewy Body & Other Dementia Conditions

While not all memory loss is related to one of these conditions, many are, so we’ll start by addressing them. In Lewy body dementia, the brain’s neural pathways have too many Lewy body proteins, causing changes in brain chemistry and leading to a decline in thinking, reasoning and independent function.

Unfortunately, Alzheimer’s and Parkinson’s are still being researched, so the diseases’ exact cause is not known. However, healthy lifestyle choices like eating a balanced diet and exercising regularly have been found to minimize one’s risk. 

2. Depression

Did you know that depression can sometimes cause memory loss? Fortunately, memory loss caused by depression is often reversible. If you’re concerned about depression in your aging parent or spouse, reach out. Let them know they have a strong support system. If your loved one is open to it, you may also want to talk to them about seeing a counselor or a psychiatrist. Antidepressants and/or therapy could help them improve their memory.

3. Pharmaceutical Interactions

As we age, we may start taking multiple prescriptions for different purposes. Maybe your loved one takes a variety of medications ranging from a Vitamin D supplement to blood thinners and an over-the-counter allergy medication. Sometimes these pills don’t interact well with one another, causing adverse side effects, including memory loss. The best way to understand whether your loved one’s medications may be causing memory loss is to consult their primary care doctor or any specialists they may visit.

4. Stroke or Head Injuries

Sudden, intense memory loss can be a sign of stroke, especially if other symptoms, like slurred speech, one-sided paralysis or sudden loss of consciousness, are present. If you suspect this is the case, call 911 immediately — every second counts in the case of a stroke.

Injuries can also cause memory loss, especially if an older person falls and hits their head. These injuries are essentially bruises to the brain, and quick action can once more help save your loved one’s life.

Age-Related Memory Loss vs. Alzheimer’s & Dementia

As we said earlier, not all people with memory loss have dementia. Forgetfulness is a part of getting older since our brains age with the rest of our bodies. Some memory issues, like forgetting your keys, having trouble remembering what day it is, or even missing a monthly bill payment, are all signs of normal aging.

If these memory slips persist and worsen, though, it could be a sign that something else is happening. Having trouble holding a conversation, making frequent poor decisions, or not knowing what time of year it is would suggest that your loved one might require medical attention.

When to Seek Medical Attention

For both brain injuries and stroke, as we mentioned earlier, do not hesitate. Call 911 or take your loved one to the emergency room immediately.

If the memory loss isn’t sudden, however, there is less of an imminent need to seek care. But that doesn’t mean you shouldn’t still be proactive. If you or your loved one are concerned about ongoing memory problems, it’s probably time to make an appointment.

The doctor will likely ask questions about how long you’ve noticed these memory lapses, medication lists, major life changes, and other questions related to the risk factors we mentioned earlier. The benefit of going to a doctor is being able to get a diagnosis. Once you have a diagnosis, you can begin to seek solutions like professional memory care to help your loved one work through this new situation.

As you can see, there are many different causes of memory loss — there are more we didn’t mention here. From infections to fatigue to allergic reactions, there could be any number of reasons your senior parent or spouse is having a lapse in memory. By seeing a doctor, you and your aging loved one can understand the cause and take steps to address it.

If you’d like to learn more about this topic, download our Make Sense of Dementia Guidebook.

Senior Care 101: Levels of Care, Explained

Senior care isn’t a single type of care.

In fact, it represents an entire spectrum, from community-based or in-home services designed to help seniors age in place, to lifestyle-focused communities that provide older people an easier-going, worry-free retirement, to residential nursing and memory care for elderly people who can no longer safely provide for themselves.

Many retirement communities  today, like Episcopal Retirement Services’ Deupree House and Marjorie P. Lee centers in Cincinnati’s Hyde Park neighborhood, and Episcopal Church Home in Louisville, Ky. are continuing care retirement communities (CCRCs), providing services along the entire continuum of care that a senior might need as he or she ages.

We’ll walk you through each of the levels of care, so that you’ll understand what each entail when you’re searching for the right care for yourself or your older loved one.

Welcome to Senior Care 101!

Let’s start with the most basic care we provide:

Home-Based Services

You’re recovering from illness, injury, or surgery and need ongoing nursing and physical therapy as you continue to heal.

You can live safely on your own, but you don’t drive anymore, have difficulty finding reliable transportation and need the extra nutritional support afforded by meal and grocery delivery.

Or, you’re aging at home, but have a complex medical or prescription regimen to follow, and need a little extra help keeping all your appointments, medication refills, insurance requirements and hospital billing sorted out.

These are all services we provide, or can help you to connect with.

When we release our short-term physical rehabilitation patients home from Marjorie P. Lee, for example, our case managers work with them, their family caregivers and the Council on Aging for Southwest Ohio to arrange prompt follow-up care from in-home nurses, and/or licensed physical, occupational, or respiratory therapists.

Our Deupree Meals On Wheels service brings meals and groceries to (and performs critical wellness checks on) thousands of seniors living on Cincinnati’s east side.

And our Living Well Senior Solutions case managers and Parish Health Ministry work with Tristate families and congregations alike to ensure older people receive the care and services they need to safely age in place.

Independent Living

Some retirees just want to worry about less.

They don’t want to mow their lawns, stay up on their home’s maintenance, or keep up with the cleaning. They don’t want to pay property taxes or keep track of all their monthly utility bills anymore.

Maybe they still drive, but are ready to downsize out of their current homes and live in a townhome or senior apartment community, where they can meet and socialize with people their own age.

Maybe they don’t drive anymore, and want to live in a community that offers them complimentary transportation to and from shopping areas, medical appointments, group outings and entertainment destinations.

That’s what independent living, in a premier retirement community like Deupree House or Louisville’s Episcopal Church Home, is like. It’s not senior care, per se — it’s more like a bit of well-deserved, affordable pampering.

Assisted Living

Assisted living is for seniors who can function more or less independently, but who would benefit from support services like daily laundry, help with cooking and cleaning, mobility or dressing assistance, etc.

At some CCRCs, a move from independent living to assisted living might require a move to a different neighborhood, building, or wing within the community. But, here at ERS, many of our assisted living services are now provided to seniors in their current suites or apartments, necessitating no move at all.

Residential Skilled Nursing and Memory Care

These levels of care are for CCRC residents who can no longer live without close support. They may need feeding assistance, continuous medical monitoring, medication administration, bathing and hygiene support, and full mobility support.

Residential skilled nursing and residential memory care, in an ERS community like Deupree Cottages, represent the highest levels on our senior care continuum.

Although residents of our skilled nursing and memory support communities are often very ill or frail, they receive the person-centered, safe and dignified care they need to realize enriched, fulfilled lives for the remainder of their years.

Would you or your older loved one benefit from a care relationship with ERS?

Whatever your family’s need, we offer the level of care to meet it.

Talk with your family about your care wishes. Then, click here to contact us with your questions or request more information.

How Can you Cope with Compassion Fatigue?

If you’re a caregiver for an elderly loved one, you're undoubtedly aware of how demanding this duty can be. Not only do you have to juggle many responsibilities, but your relationship with the older adult you're providing care for has likely changed too. It can be challenging and unpredictable at times, and unfortunately, many caregivers struggle with excessive levels of stress and anxiety due to the demands of taking on such a role.

If you have ever felt easily frustrated or overly exhausted, that doesn’t mean you’re a bad caregiver. Likewise, you are not alone. Many caregivers have experienced these sensations in the form of compassion fatigue. 

What is Compassion Fatigue?

Compassion fatigue can be a difficult concept to understand. So often we care for our aging loved ones out of love for them, but as the days, weeks, and perhaps years stretch on, this care can begin to feel monotonous. If you’ve ever felt like you’re simply going through the motions to care for a senior in your life—perhaps even taking energy away from your life and needs to do so—you’re likely experiencing compassion fatigue.

The biggest, and often most unsettling, indicator of compassion fatigue is a decrease in empathy toward your loved one. After all, you care deeply for this person and now you’re beginning to feel more negative emotions, perhaps even resentment. This sensation can take many people by surprise. But, as we said before, you’re not alone. 

While compassion fatigue has been common in medical professionals for many years, it’s now reaching family caregivers who devote their time to their loved ones. If you’re wondering if you’re working through this condition, ask yourself these questions:

• Have I let my self-care and my needs take the back burner?

• Am I exhausted often?

• Do I feel disconnected or isolated?

• Am I having trouble sleeping?

• Am I feeling dread, guilt, anxiety, anger or irritable?

• Are decisions hard for me to make right now?

• Am I having trouble finding meaning in caregiving?

If you answered yes to these questions, you could be experiencing compassion fatigue. Most family caregivers resist acknowledging they are feeling this way, but the best thing you can do is accept it and then learn how to combat it. 

What to Do if You Are Experiencing Compassion Fatigue

The first step to combating compassion fatigue, as with any condition, is to acknowledge it and commit to working through it. Then, the most important thing you can do is to establish routines for self-care. 

Self-care should include regular exercise, a balanced diet, and time to get a good, full night’s rest. By taking care of yourself first you’ll be able to provide better care to those you love. Self-care can also include planning social time and nights out with friends, which can have a dramatic impact on your well-being.

Another suggestion is to find a way to get your thoughts and feelings out of yourself. For some people, this might mean journaling about their caregiving experience every night. Others might prefer to find a support group of other caregivers — like the one offered at Marjorie P. Lee's sister campus in Cincinnati, OH—to share stories and encourage one another. Still others might choose to find a counselor or therapist to help talk through this situation.

If you’re experiencing compassion fatigue, don’t worry. By re-prioritizing your own self-care and well-being, you can pour into yourself so you can then serve your loved ones with more love and care.

Want to learn more? Download our caregiver handbook.

6 Ways To Help Loved Ones Cope With Sundowner's Syndrome

Of all the challenges that arise when a loved one has dementia, few are more terrifying for them or more difficult for you than sundowner’s syndrome. Sometimes called “sundowning syndrome,” this condition affects many with dementia during the evening. It’s marked by feelings of confusion, aggression, and anxiety, as well as a tendency to ignore directions and pace or wander.

For the sake of their happiness and mental health, it’s critical that you help them cope with this condition. Through the following methods, you can keep sundowner’s syndrome to a minimum and provide comfort and relief for your loved one.

1. Create a Comfortable Environment

One of the simplest ways to help your loved one cope with sundowner’s syndrome is to make their home environment as safe and comfortable as possible. Start by figuring out what temperature they prefer, and keep the AC or heater at that level. Then provide soft cushions and linens, and wash them on a regular basis.

Keep loud noises to a minimum, but if you have some calm, soothing music they like, put that on. These steps will ease your loved one’s anxiety and allow them to feel safe under any circumstances.

2. Maintain Good Lighting

Sundowner’s syndrome is associated with low lighting, so you can keep it to a minimum by keeping your loved one’s home well lit. Whenever it gets dark outside, draw the blinds and curtains and turn on lights inside their home. Illuminate as many dark or secluded areas as you can, so that they won’t have to deal with shadows as they move around inside.

Finally, consider setting up a small nightlight in case they have to get up at night, though don’t make it so bright that they won’t be able to sleep.

3. Promote Healthy Sleeping Habits

Your loved one is especially likely to develop sundowner’s syndrome if their sleep cycle is disrupted, so it’s important to make sure they sleep according to a regular schedule. This means not just setting times for them to wake up and go to sleep, but also eliminating habits that make it harder for them to sleep.

Encourage them to eat smaller dinners, reserving larger meals for earlier in the day; likewise, don’t let them take naps or consume sugar or caffeine after the early afternoon. Try to prevent them from watching TV late at night, as the bright colors and lights of a television can wake people up.

Encourage them to eat smaller dinners, reserving larger meals for earlier in the day; likewise, don’t let them take naps or consume sugar or caffeine after the early afternoon. Try to prevent them from watching TV late at night, as the bright colors and lights of a television can wake people up.

4. Address Sleep-Related Health Issues

Any medical condition that prevents your loved one from sleeping well is likely to increase the severity of sundowner’s syndrome. One such condition is a urinary tract infection, which can cause pain and force them to get up and use the restroom at night; both of these effects make it harder to sleep.

Another common issue is sleep apnea, which technically doesn’t prevent your loved one from sleeping, but it does mean that they will not be as rested from the sleep they get. If you suspect your loved one has one of these health issues, take them to a doctor as soon as possible for diagnosis and treatment. The sooner they eliminate underlying problems like these, the easier it will be for them to deal with sundowner’s syndrome.

5. Keep Them Active

As much as possible given the state of your loved one’s health, encourage them to get out of their home and stay active during the day. This helps them deal with sundowner’s syndrome on multiple fronts.

Physical activity stems memory loss from dementia, leading your loved one to be less confused during the evening. It has also been shown to reduce anxiety, including the anxiety of sundowner’s syndrome. Finally, regular exercise will help your loved one sleep better, making it easier for them to follow a regular sleep schedule.

6. Consider Memory Care

Although there is currently no cure for dementia, there are a number of therapies that can slow down your loved one’s memory loss and help them cope with memory loss that does occur. These include art therapy, music therapy, and cognitive exercises, as well as therapy to promote your loved one’s physical wellbeing.

These programs can help them connect with others and feel more engaged with the world around them. One-to-one support and group activities create opportunities for open expression and encourage relationship building.

For more information about coping with with the effects of dementia, download our Dementia Guide. Dementia may be complicated and challenging, but we’re here to help.

4 Steps to Take when Mom or Dad is Diagnosed with Alzheimer’s or Dementia

An estimated one-in-three Americans will be diagnosed with Alzheimer’s disease or dementia. That translates to millions of Americans living with a dementia diagnosis, and many more millions of family caregivers providing support to them.

When your parent is diagnosed with dementia, it can be devastating for both of you. What should you do? What steps should you take to make sure that your parent has the care and support he or she needs?

Consider these four critical steps you and your family should take when an older loved one gets a diagnosis of Alzheimer’s or other dementia disorder.

1. The Right Diagnosis

Work with your loved one’s doctor to rule out treatable causes of cognitive loss. Some forms of dementia aren’t caused by neurological deterioration. They could be side effects of other physical ailments like heart disease, brain masses, or intracranial bleeds. A severe urinary tract infection can cause dementia-like symptoms. Review all medications with the primary care physician. Over-medication or drug interactions from prescription regimens that aren’t coordinated could trigger memory loss. In such cases, treatment of the underlying causes might alleviate dementia symptoms.

Your parent’s doctor will likely order blood work and scans to rule out primary causes. If the doctor suspects that adverse drug interactions have caused your parent’s dementia-like symptoms, they will revise the medication regimen. You may be asked to help monitor your parent’s medication compliance and to log symptoms to help the doctor reach a definitive diagnosis. Often dementia symptoms have no discernible cause and supportive care is the best option.

2. Ask Questions, Get Support

Your parent will need a lot of understanding and support. Eventually, he or she will need caregiving from a family member, in-home care providers or a residential memory care home.

Your parent will become increasingly reliant on you to make informed healthcare decisions. You should begin learning as much as you can about dementia caregiving so that you’ll be ready to make the right choices for your parent.

You might consider joining a dementia caregiver support group. There are several here in Cincinnati, including the group that meets monthly here in Hyde Park. It may be helpful to network with other caregivers and be mutually supportive.

The Alzheimer’s Association — Greater Cincinnati Chapter and the Council on Aging can connect you with learning opportunities, support groups, and other resources. Discuss what you learn, especially online with your parent’s doctor.

3. Make financial, legal and medical arrangements

If your parent’s dementia hasn’t yet progressed to the point that he or she is debilitated, make sure you work with him or her to develop a care plan.

Now is the time for your parent to choose a residential retirement care provider, to designate his or her medical, legal and financial powers of attorney, and to complete a living will or advance care directive. If your parent has specific ideas for the dispensation of assets, those should be spelled out in legal documentation while he or she can still direct.

4. Plan for additional support or possible move

Dementia symptoms may progress slowly but rapidly worsen. It may not be safe for your parent to continue living alone. If you or one of your siblings is willing to provide daily care, it may be time to move your parent into a family caregiver’s home, or hire a live-in care partner.

Or, your parent might be interested in moving into a Continuing Care Retirement Community (CCRC), which can provide everything from assisted independent living and memory support therapy to advanced round-the-clock nursing care.

A CCRC can provide your parent a way to socialize with other seniors and live as independently as possible, for as long as possible. They can engage in enriching activities, and you and your family will have peace of mind. You will know that your parent is being closely looked after.

A dementia or Alzheimer’s diagnosis isn’t an end. It’s a beginning

To be sure, it’s the beginning to a challenging chapter. But, by taking these four steps to set affairs in order and arrange for memory care, you and your parent can alleviate some of the worry and focus on enjoying the time you have together.

You can download our Dementia Guide. We've created this Dementia Guidebook as a resource for caregivers of people living with memory loss, to help you help your loved one age as successfully as possible.

You can also download our Financial Answers Decision Guide to help you plan for the costs of care. Marjorie P. Lee Retirement Community has decades of experience in handling this disease. And we’re here to help you.

What Are the Signs of "Normal" Aging vs. “Abnormal” Aging?

Greying and thinning hair. Reduced sight and reduced hearing. Bones becoming more brittle and joints becoming stiff and sore. Receding gums and loose teeth. These are all processes we consider a normal part of aging, and many seniors in Cincinnati deal with them every day.

But what about abnormal aging? Are there warning signs that could show us when Mom or Dad's health isn't what it should be at their age?

There are. In fact, we have a guide all about positive aging for seniors. In it, you'll learn about the stages of aging, normal vs. abnormal aging, implications of aging on overall wellness, and strategies, tips and local resources for positive aging.

We'd like to take a moment to discuss some of the warning signs of abnormal aging, so that you'll know what to look for...and when to intervene.

Eyesight

Signs that your older loved one might be having difficulty seeing include squinting while reading or asking others to read things out loud to him or her, slow driving, clumsiness, and trips and falls.

One of the most common sight-related problems in the elderly is the development of cataracts, which cloud the vision and can render an older person nearly blind. At first, a cataract isn't obvious, but left untreated it'll become apparent as a milky color over your elder's pupil.

The good news is that they're curable. Radial keratotomy and laser eye surgery can be used to drain the cataract's fluid. Other changes, though, like glaucoma or macular degeneration, aren't curable. They require ongoing, close monitoring by an ophthalmologist (eye doctor).

Glaucoma is an abnormal increase in the eyeball's internal fluid pressure. It's the leading cause of blindness in people 60 and older. If caught and treated early, though, blindness can be prevented.

Macular degeneration is another leading cause of age-related blindness, affecting an estimated 10 million Americans. It's caused by deterioration of the central part of the retina and causes a "hole" in a person's vision.

At present, macular degeneration is incurable, but it is treatable. And it's important for seniors to receive yearly eye exams to detect problems early.

Touch

Many seniors begin to experienced decreased sensitivity to hot and cold, or to touch. That's normal. But numbness isn't. And it can be a sign of a serious neurological problem.

Sudden loss of sensation in an extremity, or along one side of the body, could be indicative of a stroke. If your elder reports a sudden loss of sensation or quick-developing numbness, he or she should be seen immediately in the ER.

Numbness that comes on slowly and continues to worsen might also be an indication of a neurologic problem; it might be caused by a problem with one of the cushioning spinal discs in the neck or back, by a pinched nerve, or even by a growing tumor.

Diabetes is another potential cause of numbness — particularly in the hands and feet because it causes decreased blood circulation. If your older loved one consistently complains of worsening numbness in the extremities, he or she should be seen by the doctor.

Numbness can also be caused by an adverse medication reaction. Many American seniors take multiple medications, vitamins and/or supplements to treat chronic ailments; occasionally, these medications can react with each other in unintended ways. Sometimes, that can cause a medical emergency.

The good news is that, if identified early, medication reactions are often fully reversible by a change in medication or change in its dose.

Behavioral changes

Uncharacteristic behaviors and instances of severe mood swings could be a sign that your loved one is depressed. They could also be a warning sign that your elder is developing new-onset Alzheimer's or other dementia disorders.

In dementia cases, one of the most common things people notice is that the individual becomes easily tired in the afternoon and early evening, and that he or she exhibits behavioral outbursts. This is known as "sundowning."

Inappropriate behaviors — laughing at odd moments, sudden bursts into tears or hysterics, or irrational anger — can also be a sign that an older person might be developing dementia. If you notice these in your loved one, encourage him or her to schedule a doctor appointment.

Memory loss and confusion

The classic hallmark of Alzheimer's disease — or of dementia disorders in general — is, of course, profound memory loss.

Some memory loss is a normal part of aging — forgetting an anniversary, for example, or forgetting to meet for coffee with a friend, could easily be chalked up to momentary forgetfulness.

But if your elder has forgotten something profoundly personal and important, like his or her own address, your name or your birthday, or the year he or she graduated high school, there may be something more insidious afoot.

Watch for these warning signs...and others

These are some of the most commonly reported signs of abnormal aging. But there are many, many more. Click here for an extensive checklist of signs that your senior loved one's health might not be optimal.

If you suspect your elder might be exhibiting some signs of failing health, you should encourage him or her to be seen by a family doctor or geriatrician right away. Nothing is gained by taking a "wait-and-see" approach, but early and decisive action could save your loved one's life.

Want to know more?

Download the ERS Guide to Positive Aging. In it, you’ll learn more about the stages of aging, the implications of aging on overall wellness, local positive aging resources and more.

4 Steps for Safe Travel with a Parent with Alzheimer's or Dementia

If your parent is living with Alzheimer’s or some other form of dementia, you might think that travel is off the table. In fact, not only can people who have dementia travel, but trips can also help them stay stimulated and reconnect them with loved ones in distant locations.

Nonetheless, traveling with a parent who has dementia does create some unique risks and challenges. By following these tips, you can prepare for those challenges and make sure you both have a safe, happy and enjoyable trip:

Step 1: Assess their Ability to Travel

Whether and how your parent can travel depends on the specific form of dementia they have, as well as the severity of the condition. If they are still in the early stages of dementia and are responding well to memory care, they’ll likely still be able to travel to a wide range of locations.

But if they have a more severe version of dementia, their ability to travel is limited. This doesn’t necessarily mean they can’t travel at all, but it might mean you should stick to shorter trips and destinations they’re familiar with. Consult with your parent’s doctor and other care providers before taking them on a trip, and make sure they’re on board with your plan.

And don’t forget to talk to your parent themselves and ask if they want to go. If they’re eager to take the trip, that’s a good sign, and you should find a way to make it happen. But if they don’t want to go, or even seem hesitant to do so, don’t pressure them to. Above all, your goal should be to keep your parent happy, no matter what that takes.

Step 2: Keep it Short & Simple

If you and your parent have decided that you do want to go on a trip and can do so safely, the next step is to plan it out. The shorter and simpler the trip is, the less likely your parent is to feel confused, scared, or uncomfortable along the way. You should thus minimize disruptions and travel time by:

Planning a nonstop flight: When flying, look for a nonstop flight. Connecting flights tend to create problems, both because they make the trip more complicated and because they raise the risk that you’ll be delayed or miss a plane.

Setting schedules strategically: There’s no way to avoid delays entirely, but you can make them less likely by traveling at strategic times. For example, when flying into the Northeastern U.S., delays are more likely if your flight takes off in the evening than if it’s in the morning. So if possible, book a morning flight.

Traveling during daylight: People with dementia often experience sundowner’s syndrome, or a marked increase in anxiety, confusion and aggression after the sun sets. So whenever possible, travel during the daytime, and start your trip early enough that it will still be light out even if your flight or car is delayed.

In general, it should be possible to take these steps if you’re willing to pay a little extra, consider multiple routes and look for flights from multiple airlines. The shorter and simpler you keep the trip, the easier it will be on your parent.

Step 3: Stock Up

Before heading out on your trip, stock up on everything your parent will need on the way, including:

Medications and equipment: Bring any essential medications and equipment in large enough quantities to get your parent through the trip. Even if you’ll be able to get more of them at your destination, you should still bring them with you in case you get delayed somewhere. If you’re flying, make sure to contact airport security ahead of time and see if you have to make any special arrangements to get these items on the plane.

Familiar items: People with dementia often have trouble coping with being in a different environment. You can make it easier for them by bringing clothes blankets, books, and other items that they will recognize. This is particularly important if you are flying, as it will help them feel less overwhelmed by the bustle and confusion of the airport.

Identification aids: Have your parent wear a bracelet with their name and your contact information on it. This way, if they do get lost, it will be easier for those who find them to get in contact with you before long.

Step 4: Make Traveling Cards

Print or hand-write an index card or business card-sized note for those you might encounter about how they could be more helpful if they only knew that your loved one was living with Alzheimer’s or other form of cognitive loss.

A brief printed explanation can save you from talking about the behaviors your traveling companion may be displaying. Once others are clued in, it can make a difficult situation manageable with help from those around you, such as a server, flight attendant or seat companion. Click here for ideas about what to include on the card.

For many more tips on traveling with a parent with Alzheimer’s or dementia, check out this list from the Alzheimer’s Association. And for more advice on caring for a parent with dementia, download our free Dementia Guide or contact us for more information on how to keep your parent safe and happy throughout all of life’s journeys.

How to Make Your Home Alzheimer’s and Dementia Friendly

Many people in Cincinnati provide full-time care, in their own homes, for loved ones with Alzheimer’s disease and dementia. For some, it’s a labor of love. For others, it’s a necessary cost-saving measure.

For people with Alzheimer’s dementia, aging at home can be a bit tricky. Alzheimer’s not only robs people of their memories — it robs them of their mobility and their ability to orient to their surroundings.

Many people with Alzheimer’s or other forms dementia will wander, especially in the later stages of the disease. That puts them at great risk of becoming lost or incurring serious, fall-related injuries.

Luckily, there are simple steps you can take to mitigate wandering and reduce your senior relative’s chances of falling or otherwise becoming injured.

If you live with, or are frequently visited by, a loved one with Alzheimer's or age-related dementia, here's how you can make your home a safer, more friendly and welcoming place for them.

Increase the ambient lighting

Don’t keep those shades drawn. Open them up and let the sunshine in. Some experts on aging recommend increasing your home’s lighting level to reduce the risk of falls.

How so?

Many seniors — those with dementia and otherwise — have reduced visual acuity, compared to younger adults. Brightening things up can help an older person see potential obstacles and, in general, get around better.

Increasing the lighting, at least during the day, can also keep your loved one with dementia safer by helping him or her to maintain a normal sleep pattern.

View More: How Cincinnati Can Become a More Age-Inclusive City

Seniors with Alzheimer’s disease often exhibit restlessnessand have difficulty falling asleep. Fatigue, in turn, can lead to behavioral issues (“sundowning”), reduced immunity to communicable diseases, muscle soreness and decreased ability to focus, especially later in the day.

If you increase the ambient light level in your home, and time your lights to coincide with sunrise and sunset, you can help your loved one to maintain a normal Circadian rhythm (the light-regulated bio-mechanism that regulates sleep patterns).

Remove trip hazards

Alzheimer’s disease and advanced dementia rob people of their fine motor control. Consequently, one of the hallmarks of the disease is a shuffling gait. A loved one with mid- to late-stage Alzheimer’s will scuff his or her feet on the floor while walking, so it’s imperative that you remove any and all obstacles.

If you have area rugs or throw rugs, roll them up and store them for the duration of your loved one’s time in your home. If you have slick, hardwood floors, install handrails in the corridors or consider laying in wall-to-wall carpeting. And, if there are bubbles in your carpet, have them professionally stretched or tacked down.

Tape down wires, hide them behind furniture or better yet, take them up entirely. Don’t leave phone chargers or power adaptors plugged in when you’re not using them — unplug them, roll up the wire and put it away.

Create a calm, soothing environment

Sights, sounds and smells that might not distract you or me can be completely overwhelming for people with Alzheimer’s or late-stage dementia, because the disease robs them of the ability to filter out sensory stimuli.

Removing distractions can help your loved one to maintain focus and reduce his or her stress level. Pay attention to surroundings: Keep TV and stereo volumes at a minimum, don’t let your dog incessantly bark or jump up and ask the kids to keep it down or play outside.

Seniors with dementia can’t always express how they’re feeling, so you’ll need to closely observe behaviors and proactively keep the peace.

Need more tips for making your home Alzheimer’s friendly?

Download our free Dementia Guidebook. In it, you’ll find advice that will help you to provide excellent, person-centered care for your senior loved one, critical information about community-based resources and tips for making your home safer.

With your help, we can achieve Laura Lamb’s goal of making Cincinnati one of the most age-inclusive and dementia-friendly cities in the nation.

The Little Lies We Tell Aging Parents Who Are Suffering from Dementia

Many of us who deal with aging parents suffering from dementia have faced the difficulty of imparting to them bad news, or of trying to convince them to accept care that they need when they can no longer live independently. Sometimes, these conservations can become quite heated.

You’ve probably always been told to be truthful with everyone and especially with your parents. But now, some geriatric care experts are beginning to advise caregiving children to employ white lies in order to ease tensions and help parents with dementia to maintain dignity.

Why would anyone advocate lying to a parent?

Let’s first be clear: we’re not talking about big lies, and we’re not talking about employing them with a parent who has normal cognitive function and unimpaired decision-making abilities. We’re only talking about situations in which you are dealing with a parent who is suffering from Alzheimer’s, or other dementia-type disorder, that limits his or her ability to self-manage and make sound decisions.

Aging parents with dementia can often become frustrated, or even recalcitrant, when they perceive that they are losing control of the ability to make decisions for themselves. Their senses of dignity can become more easily offended; they might transfer their anger at their own decline onto the people around them.

But 90% of senior care managers surveyed by the National Association of Professional Geriatric Care Managers (NAPGCM) in April, 2014, said that small lies, or what they call “fiblets,” are OK to tell dementia patients when they refuse care, or when a truth would otherwise be painful for the patient to learn.

So what is a “fiblet?”

According to NAPGCM President Emily Saltz, a fiblet is a small lie that, “is therapeutic because it calms and reassures, reduces anxiety and protects self-esteem.”

The experts who advocated using them in sensitive discussions were careful to caution that they should only be used to support or protect a patient and should never be used for personal gain.

Which “fiblets” are OK?

The majority of geriatric care experts who responded to the NAPGCM survey (83%) felt that telling a demented parent that an in-home caregiver was coming to the parent’s home to help a spouse, or to perform “some other concrete role,” such as helping to keep the house tidy, cook, or make small repairs, could help the parent feel less anxious and might head off a confrontation.

Another common, therapeutic fib that 68% of responding care managers endorsed is telling a demented parent who can no longer safely drive on his or her own that the car is in the shop for repairs. This can prevent the parent from attempting to drive unsafely, or prevent arguments over keys.

68% of care managers also agreed that keeping a dementia patient from knowing the true cost of in-home or assisted care is ok, if knowing that cost would prevent him or her from accepting care. This seems like a no-brainer; if a parent’s only objection to life-improving care is the cost involved, then one cannot allow that cost to be known. Money is the last thing that should keep a person from receiving the care he or she needs.

Over 6 out of 10 care managers also said that they felt it to be OK to avoid telling a dementia patient about family problems that he or she cannot help or control, such as a loved one’s unemployment, an impending divorce, a loved one’s death, a family member’s drug abuse or incarceration, or other peripheral worries. All this would accomplish would be to add to the patient’s overall stress and anxiety level. It’s counterproductive to their care.

If, for example, a significantly demented patient continually asks where her husband is, even though he died years before, most care managers feel it is OK to tell the patient that her husband stepped out for a moment and would be back later. This prevents the patient from having to continually re-learn and re-process her spouse’s death, and alleviates her immediate fear.

You need a supporting team.

Virtually all the care managers who responded to the NAPGCM’s survey agreed that families should approach delicate or sensitive interactions with a clear support group in place, including the involvement of a professional geriatric expert.

All family members need to approach the patient with a unified purpose and a consistent message, so that internal dissensions or conflicts aren’t perceived by the patient and add to his or her general anxiety level.

Again, white lies and fiblets aren’t appropriate for dealing with an aging parent with normal cognition. But when caring for a loved one with advancing dementia, they can be powerful tools for caregivers who want to ease the parent’s anxieties and allow him or her to get the assistance he or she needs.

3 New Developments in Alzheimer’s and Dementia Research

As you might imagine, as one of the Cincinnati area’s premier senior living and memory care providers, we make it a point to stay closely abreast of new developments in Alzheimer's dementia research.

Lately, there have been some startling new discoveries that may one day revolutionize the way we approach dementia and Alzheimer's treatment. From new definitions of Alzheimer's to advances in gene identification and the development genetic therapies, there's much to learn about.

Today, we'd like to share with you some of the information we've learned about three promising developments in cognitive research that may help people who develop dementia in the future.

1. Researchers recommended a new way to distinguish between Alzheimer's and other dementias.

A longstanding problem in the field of cognitive research has been the lack of a standardized definition of just what constitutes "Alzheimer's dementia."

Many other dementia-type disorders present with similar symptoms to Alzheimer's, so diagnoses has traditionally been made, to some degree, by clinical assumption: if all other dementia causes have been ruled out, the symptoms must be Alzheimer's.

But new research is beginning to resolve the fine, distinguishing line. A new clinical definition of Alzheimer's has been proposed by researchers with the Alzheimer's Association and the National Institute on Aging.

Alzheimer's, they advised, should be formally distinguished by the convergence of three characteristic symptoms: the presence of beta-amyloid plaques and tau tangles in the brain, and evidence of neurodegeneration (declining brain tissue density, like that seen in this comparative image).   

Their proposal, which is in line with recent guidance from both the U.S. Food & Drug Administration and its European counterpart, which should open up routes for medication development and testing.

2. Researchers may have figured out a path to one day reverse Alzheimer's damage.

It's not conclusively known whether or not the presence of beta-amyloid plaques and tau tangles cause neurodegeneration, or whether abnormal protein buildups and brain tissue death are both symptoms of the same disease process. But they are certainly associated with one another.

We do now know that a particular gene — APOE ɛ4 — is strongly associated with an increased risk of developing Alzheimer's disease. The gene causes the body to produce the APOE ɛ4 protein, which may be a precursor that promotes the formation of beta-amyloid plaques.

Having one copy of the gene is known to increase one's likelihood of developing Alzheimer's fourfold. Two copies of the gene increase the likelihood by as much as 12 times.

Recently, researchers working with human stem cells were able to develop a method of changing the structure of the APOE ɛ4 protein to potentially render it harmless. Their efforts appear to reversed the development of beta-amyloid plaques in lab-grown human tissue.

That's an incredibly important development. Why?

Although it's far too early to say that there's a potential cure on the horizon for Alzheimer's dementia, demonstrating the ability to develop genetic therapies that target the disease's associated (and possibly causal) risk factors represents a significant advance in the search for effective treatments.

3. Not all Alzheimer's cases are genetic in origin.

The debate about whether genetics, acquired factors like cardiovascular disease, or a bit of both ultimately cause all Alzheimer's cases has raged for decades. The aforementioned clarified definition of Alzheimer's dementia will certainly help science to settle that debate.

In the meantime, there is some evidence that improving heart fitness rates (or, at least, improved treatments for cardiovascular diseases) may be slowing Alzheimer's incidence rate.

At a recent symposium, the chair of the Harvard T.H. Chan School of Public Health's epidemiology department, Dr. Albert Hofman, noted that several studies have indicated Alzheimer's occurrence has dipped approximately 20 percent since 1990 in the United States.

That's intriguing. To date, the conventional view has been that the Alzheimer's incidence rate will continue to rise as the Baby Boomers age.

Hofman stated that he believes the majority of Alzheimer's cases to be acquired (non-genetic). If that’s true, population health efforts to reduce obesity, head injuries and heart disease might yield large decreases in the number of people developing Alzheimer's dementia.

There are still many questions to answer about Alzheimer's dementia.

While science does its best to determine Alzheimer's causes and effective, new memory care treatments, we'll continue to provide quality residential memory care to local people living with dementia and their families.

If you still have questions about your older loved one's Alzheimer's or dementia diagnosis, we have answers for you, too.

4 Steps to Take when Mom or Dad is Diagnosed with Alzheimer’s or Dementia

An estimated one in three Americans will be diagnosed with Alzheimer’s disease or dementia. That translates to millions of Americans living with a dementia diagnosis, and many more millions of family caregivers providing support to them.

When your parent is diagnosed with dementia, it can be devastating for both of you. What should you do? What steps should you take to make sure that your parent has the care and support he or she needs?

Consider these four critical steps you and your family should take when an older loved one gets a diagnosis of Alzheimer’s or other dementia disorder.

1. The Right Diagnosis

Work with your loved one’s doctor to rule out treatable causes of cognitive loss. Some forms of dementia aren’t caused by neurological deterioration. They could be side effects of other physical ailments like heart disease, brain masses, or intracranial bleeds. A severe urinary tract infection can cause dementia-like symptoms. Review all medications with the primary care physician. Over-medication or drug interactions from prescription regimens that aren’t coordinated could trigger memory loss. In such cases, treatment of the underlying causes might alleviate dementia symptoms.

Your parent’s doctor will likely order blood work and scans to rule out primary causes. If the doctor suspects that adverse drug interactions have caused your parent’s dementia-like symptoms, they will revise the medication regimen. You may be asked to help monitor your parent’s medication compliance and to log symptoms to help the doctor reach a definitive diagnosis. Often dementia symptoms have no discernible cause and supportive care is the best option.

2. Ask Questions, Get Support

Your parent will need a lot of understanding and support. Eventually, he or she will need caregiving from a family member, in-home care providers or a residential memory care home.

Your parent will become increasingly reliant on you to make informed healthcare decisions. You should begin learning as much as you can about dementia caregiving so that you’ll be ready to make the right choices for your parent. 

You might consider joining a dementia caregiver support group. There are several here in Cincinnati, including the group that meets monthly here in Hyde Park. It may be helpful to network with other caregivers and be mutually supportive.

The Alzheimer’s Association — Greater Cincinnati Chapter and the Council on Aging can connect you with learning opportunities, support groups, and other resources. Discuss what you learn, especially online with your parent’s doctor.

3. Make financial, legal and medical arrangements

If your parent’s dementia hasn’t yet progressed to the point that he or she is debilitated, make sure you work with him or her to develop a care plan.

Now is the time for your parent to choose a residential retirement care provider, to designate his or her medical, legal and financial powers of attorney, and to complete a living will or advance care directive. If your parent has specific ideas for the dispensation of assets, those should be spelled out in legal documentation while he or she can still direct.

4. Plan for additional support or possible move

Dementia symptoms may progress slowly but rapidly worsen. It may not be safe for your parent to continue living alone. If you or one of your siblings is willing to provide daily care, it may be time to move your parent into a family caregiver’s home, or hire a live-in care partner.

Or, your parent might be interested in moving into a Continuing Care Retirement Community (CCRC), which can provide everything from assisted independent living and memory support therapy to advanced round-the-clock nursing care.

A CCRC can provide your parent a way to socialize with other seniors and live as independently as possible, for as long as possible. They can engage in enriching activities, and you and your family will have peace of mind. You will know that your parent is being closely looked after.

A dementia or Alzheimer’s diagnosis isn’t an end. It’s a beginning.

To be sure, it’s the beginning to a challenging chapter. But, by taking these four steps to set affairs in order and arrange for memory care, you and your parent can alleviate some of the worry and focus on enjoying the time you have together.

How to Cope With Feelings of Grief After a Parent's Dementia Diagnosis

It can be hard to come to terms with a parent's age-related memory loss. It can be even more challenging  to grieve an elder's Alzheimer's dementia diagnosis.

There's no getting around it: An Alzheimer's diagnosis is always a fatal one. There's no known cure. There's no way to stop the disease in its tracks.

Various memory care methods might be useful in slowing the progression of a loved one's Alzheimer's dementia, but results are hit-or-miss in many cases. There can be periods of prolonged stability, followed by periods of rapid decline.

It's heartbreaking to watch a loved one's decline, and the unpredictable nature of the disease can be emotionally and spiritually draining. So, where can family caregivers find support? How can you cope?

Today, we'll discuss several coping methods recommend for caregivers when they are grieving an Alzheimer's diagnosis in an elderly loved one. We'll call your attention, too, to some of the caregiving and memory support resources available to your family here in the Cincinnati area.

Be cognizant of your grief process.

Most people expect to go through the stages of grief when a loved one passes away, or when a romantic relationship comes to an end. Fewer understand that they are likely to go through a grieving process when a loved one falls ill.

It makes sense if you think about it: Alzheimer's dementia robs your loved one of the ability to communicate with you in the manner you're both accustomed to.

It can seem like your loved one is mentally gone before he or she is physically gone, so it's natural that you would grieve as if he or she were already gone.

But there are ways to communicate with your loved one, even in Alzheimer's most advanced stages. It takes a lot of trial and error, and it requires patience, but you can learn your older parent's "caregiving language" — akin to Dr. Gary Chapman's 5 Love Languages — and maintain your bond.

As you do, you should also learn about your own grief language: the methods by which you express your grief, and in which you understand others' expressions of grief.

Here are several coping methods you should try.

Memory care experts and therapists alike agree that the following are helpful in dealing with your grief.

• Acknowledge and accept your feelings.
  When your loved one has dementia, it's normal for you to feel all sorts of negative emotions: sadness, anger, frustration, guilt, even emptiness or numbness.
  
  It's OK for you to feel those things. Allow yourself to. If you do and accept that they will crop up, it's easier to face and overcome them.
  

• Expect setbacks.
  Sometimes, if you assume setbacks will happen, you'll be pleasantly surprised when better things happen, and you'll be able to enjoy the good times even more. And we don't just mean setbacks in your loved one's mental status. We mean disturbances in your emotional status, too.
  
  Again, allowing yourself leeway to feel negative emotions will help you to work through them, rather than letting everything build up to the point that you explode or shut down.

• Recognize that your grief process will be unique to you.
  No two people experience grief in exactly the same way. Others might be able to understand that you feel grief, but remember, they don't know exactly what you feel. But that's something that, in and of itself, could help you.
  
  Because a licensed therapist can't feel the grief you feel, he or she can serve as an objective, non-judgmental sounding board for you. Consulting with one could help you see clearly even when intense emotions threaten to blind you.
  

• Reach out to others.
  Try attending Episcopal Retirement Services' monthly caregiver support group. Attend another dementia caregiving support group here in Cincinnati.

  
  Join an online caregiver support forum. Talk with your family and friends. Don't be afraid to ask other people to let you lean on their shoulders for a while. Because, believe it or not, talking can help. Hugs can help. Shared tears can help.
  
  No, they won't cure your elder loved one's dementia. But they will remind you that you're not alone in this and help you to let a little bit of air out of your emotional balloon.
  

• Remember to care for yourself, too.
  Many family caregivers devote their full attention to meeting their loved one's needs but neglect their own. That's noble and admirable in the short run; in the long run, it's detrimental to your mental health and to your loved one's continued wellbeing. Set aside time for spiritual self-care and rest.
  
  If you feel like you don't have enough time to do that, you should definitely look into community-based resources — for example, temporary respite care admissions for your loved one, adult memory care day programs, or in-home nursing — that could alleviate some of the care burden you're under.

[QUIZ]: How Much Do You Know About Alzheimer's & Dementia?

As we get ready for the Alzheimer’s Association’s annual fundraising and awareness event, The Longest Day, held every June 21, let’s take a minute to test your knowledge about Alzheimer’s disease, age-related dementia and memory care.

Take our quiz below, and then see how you did by checking the answers to the questions at the end of the article. Have fun and, if you learn something new, make sure you share it with your family and friends to help foster better community understanding of the critical need for more dementia research and more caregiving resources in the Tristate.

Let’s see how you do!

1. What percentage of American seniors suffer from Alzheimer’s and other age-related dementias?

1. 2.1%

2. 6.7%

3. 10.0%

4. 18.2%

1. In 2014, the most recent year for which data is available, what was the total estimated value of unreimbursed care provided to Americans with dementia by family caregivers?

1. $217.7 billion

2. $331.2 billion

3. $547.1 billion

4. $1.2 trillion 

1. What did the estimated value of unreimbursed dementia care in 2014 equate to in terms of approximate percentage of total US gross domestic product (GDP) for the same year?

1. 0.33%

2. 1.25%

3. 2.17%

4. 5.73%

1. What percentage of his or her annual income does the average family caregiver pay out-of-pocket, per year, to support a loved one with age-related dementia?

1. About 5%

2. About 20%

3. About 28%

4. About 39%

1. What causes Alzheimer’s disease?

1. A buildup of amyloid plaques in the brain.

2. Lewy bodies.

3. A high fat diet.

4. The causes of Alzheimer’s disease are not well understood.

5. Genetics

1. What’s the most effective modern method of memory care for Alzheimer’s and dementia patients?

1. Game-based learning, such as SAIDO Learning

2. App-based learning, including Grey Matters

3. Music therapy

4. Art therapy

5. Monitored “safe wandering”

6. All of the above

ANSWERS:

1. (c) 10%. According to the Alzheimer’s Association, 1 in 10 Americans aged 65 or older has an Alzheimer’s dementia diagnosis.

1. (a) According to the Alzheimer’s Association, the economic value of the care provided by unpaid caregivers to those with Alzheimer's disease or other dementias was $217.7 billion in 2014. The total value of unreimbursed care is projected to continue growing as the Baby Boom generation reaches peak retirement. 

1. (b) About 1.3%. In 2014, total US GDP was $17.393 trillion.

1. (b) Per AARP’s “Family Caregiving and Out-of-Pocket Costs: 2016 Report,” the average American family caregiver annually spends approximately $6,954 out-of-pocket to support a loved one with dementia, which is reportedly about 20% of the national median income.

1. (d) Although amyloid plaque aggregations have certainly been observed in a large number of Alzheimer’s patients, it is not known if they’re causal for Alzheimer’s, or simply a co-symptom. Moreover, not all Alzheimer’s patients exhibit anomalous amyloid plaque build-ups.

Lewy body proteins are suspected to cause another form of age-related dementia that is, in many respects, similar to Alzheimer’s.

High fat diets have been investigated as possible vectors for the development of Alzheimer’s dementia but, to date, no definitive, causal relationship has been demonstrated.

Several genes, including APP, PS1 and PS2, have been demonstrably linked to the development of Early-Onset Familial Alzheimer’s Disease (eFAD), but they’re probably not responsible for more traditional Alzheimer’s disease presentations. Like breast cancer and heart disease, some Alzheimer’s cases are probably attributable to genetics, while others are not.

The only fact we really know is that we don’t really know, for every patient, if there’s a single “smoking gun” factor or set of factors that causes Alzheimer’s to develop.

1. (f) All of these methods are considered state-of-the-art methods for memory care. Marjorie P. Lee and its Episcopal Retirement Services sister communities offer a full suite of residential memory care treatments, including all those listed here.

💵 How to Pay for Care for a Loved One with Alzheimer's or Dementia

If you have an elderly loved one with Alzheimer's or dementia, you’re first concerned with what to do to care for them. But the second, natural concern you’re going to have is, “How much will it cost?”

And that’s nothing to feel guilty about. The cost of senior care is a significant cause of concern for many American families, especially given recent studies that have indicated the price of private, residential senior care has risen 11 percent since 2011.

But there are ways to plan effectively for your loved one’s memory care. And if you know what to expect, you can develop a better care strategy. Here’s what you need to know.

1. Your loved one’s private insurance may have a lifetime limit and/or exclusions

If your parent or grandparent has just been diagnosed with Alzheimer’s or dementia, and has private health insurance and/or long-term care insurance, one of the first calls that should be made is to his or her agent or insurance provider.

It’s likely that his or her policy has a lifetime maximum on coverage. You need to know what that is, and when to expect that maximum will be reached.

In cases where the spouse is still living at home, outside the retirement community, additional assets may be exempt.

It’s also possible that there are specific coverage exclusions listed in the policy. You should review the coverage with your loved one’s agent so that there are no surprises when a charge is disallowed.

If you know what the limitations are on the coverage, you may be able to work with doctors and retirement care providers to avoid them altogether, without compromising the standard of care.

2. Early-onset dementia and Alzheimer’s patients may be able to withdraw from retirement accounts early

If your loved one is younger than 59½ and has been diagnosed with dementia, Alzheimer’s, Parkinson’s or certain other illnesses, he or she may be able to withdraw from an IRA or employee-sponsored retirement plan early, without incurring the usual 10 percent tax penalty. You should consult with a qualified CPA or financial professional who can guide you on the finer points.

Some pension plans also pay disability benefits to early-onset dementia or Alzheimer’s patients. If your parent is a member of a pension plan, you should check with the plan provider to find out what he or she might be eligible for.

Early-onset dementia may also qualify your loved one to receive Social Security disability income (SSI or SSDI) which, in turn, would provide Medicaid eligibility (after assets are spent down).

3. Speaking of spend downs . . .

Medicare and Medicaid require that your loved one spends down assets before full coverage kicks in. Some assets — the home (if a spouse or disabled adult child is still living there), furnishings and personal belongings, one personal vehicle, pre-paid burial assets and a life insurance policy (with a face value up to $1,500) — are protected and not currently subject to spenddown requirements. And spenddown requirements themselves may vary from state to state.

But investments like stocks, bonds and annuities, cash reserves, other properties and additional vehicles must be divested. And there are strict restrictions on “gifting” assets to other family members in order to avoid spending them down — restrictions that result in stiff sanctions when you’re caught.

In cases where the spouse is still living at home, outside the retirement community, additional assets may be exempt. For example, the spouse may retain his or her own retirement accounts or certificates of deposit, without needing to spend them down, plus 50 percent of other the couple’s countable assets.

Best course of action to prepare? Consult a lawyer or CPA who is well-versed in Medicare/Medicaid requirements as they pertain to asset spend downs.

4. Community resources may be available to help ease the financial hardship on your family

Check with your local chapter of the Alzheimer’s Association or on the federal government’s Eldercare Locator to find information and links to resources that might be available in your area. Some of those might include reduced-cost or free respite care programs, Meals on Wheels deliveries, in-home care and more.

If your parent is a veteran, additional resources or programs may be available through the Veteran’s Adminstration, including caregiver support.

You might also check with the Family Caregiver Alliance and the National Council on Aging, to find additional eligibilities for your loved one and your family.