Thank you for picking up Caregiver Solutions magazine. Most likely you or someone you know is a caregiver.
Many of you are providing caregiving services as volunteers, not receiving compensation for your time and energy.
Information is power, and the articles presented within were carefully selected to address a wide range of topics, including frontotemporal dementia (Bruce Willis was recently diagnosed with FTD); Medicare and home health; alternatives to living at home; long-distance caregiving; and more.
You’re learning that the more you know about the myriad services and organizations available in the community, the better prepared you are to help your loved ones make decisions.
Professional caregivers, those getting paid to provide services, can be a godsend. They offer services such as home care (nonmedical), home health care (skilled care), and hospice care. When remaining at home is no longer possible, there are personal care, assisted living, and nursing care options available.
Please review the Directory of Housing & Care Providers featured in Caregiver Solutions. It includes agencies and living communities whose staff are trained to assist in making care assessments so your loved one receives the care needed to live as independently and as safely as possible.
Additional assistance is often needed outside of living and care options, so visit the Directory of Ancillary Services page, which includes legal services and offices of aging information.
You’ll also want to check out the “Good Reads” section within. Reading about other people’s experiences or what professionals have to offer can be enlightening. Books are available in both my favorite reading material — print — or as an e-book.
If you didn’t think there was any monetary compensation that you would qualify for to offset caregiving expenses, there may be. Please check out Caregiver Support Programs and Frequently Asked Questions.
I hope the information offered helps you on your caregiving journey. If you have a suggestion for a future article, please let me know. We endeavor to deliver the information you need.
Questions You Should Ask Your ParentsBy CHERYL M AGUIRE
“Now I’ll never know the answer.”
I’ve heard my mom say this many times since her parents passed away. Often, she has a question about a childhood memory or a possible genetic medical issue that she wished she had asked her parents while they were still alive.
After she makes this declaration, she sounds sad that she is left with these unanswered curiosities that only her parents knew. Of course, she misses her parents, but there is also a sense of regret that she didn’t ask these questions when she had the chance.
Michelle Blanchard Ardillo, 64, a freelance writer and an academic tutor in Rockville, Maryland, has had similar feelings about her parents who passed away.
“I wish I would have pressed my mom and my dad to talk about their childhood and their parents. I feel a void where those connections should be,” she says.
Gretchen Kubacky, Psy.D., a health psychologist and author of Moving through Grief: Proven Techniques for Finding Your Way after Any Loss, shares her personal experience after losing her parents.
“I wish I had asked my mother more about her relationship with her father. I also would have liked to know if she had truly wanted to be a stay-at-home mom or if she felt like it was a predetermined choice. For my father, I would have wanted to know more about his experience growing up as a first-generation GermanAmerican,” she says.
Since my parents are still alive, I would like to try to prevent these feelings of regret, so I turned to the experts to learn more.
“When your parents die, you want to have as few regrets as possible and the assurance that you did the best you could for them. Only by asking the questions in
advance will you know this for sure,” says Kubacky.
Questions to Ask
So where do you begin? The process can seem overwhelming and sad, since most people have a hard time discussing death or dying.
Amy Pickard, a grief coach, created a Departure File that includes questions related to childhood memories, accomplishments, and other reflections. You could ask your parents to fill out the form if it is easier for them or use it as a basis for conversation starters.
Clare Bidwell Smith, a grief counselor and author of Anxiety: The Missing Stage of Grief, recommends using Pickard’s booklet or using conversation cards to help facilitate discussions. Based on Kubacky and Bidwell Smith’s experience working with their clients about grief, they highlight some key questions you could ask:
• Are there certain ways you’d like to be remembered?
• Are there signs you think I should look for that will remind me of you?
• What are songs I could play to remember you by?
• Are there any places I could travel to that you loved and visited?
• When I’m sad and missing you, is there something you think I should do or remember?
• What’s your strongest childhood memory?
• What was your first date with (the other parent) like? Or, how did you meet?
• What are you most proud of in your life?
• Do you have any big regrets?
• If you could have done one thing differently in your life, what would it be and why?
How to Handle Parental Resistance
So, what should you do if your parent doesn’t want to answer your questions? How should you handle it? The experts offered some suggestions about how to respond when your parents don’t want to
discuss certain topics.
Kubacky suggests that you respect your parent’s desire for privacy but also keep gently coming back to the topics.
Pickard explains that her father is not a “touchy-feely, emotional share and care guy,” so she knew she had to frame her questions in a way that he would feel comfortable responding. Instead of asking him a personal question, she asked, “What are the 10 traits that you think I got from you?”
At first, he responded, “I don’t think about that kind of stuff.” But then he called her an hour later and listed traits like her sense of humor and sports ability that he shares with her.
Pickard also stresses that sometimes you might have to ask the question a few times before they answer, or they might not respond right away, like her father.
“Just keep at it. If your parents don’t want to talk about stuff, you may want to keep pressing them and try to figure out a way that it’ll be palatable, or try to be creative in getting the information that you want,” she says.
Why These Questions Are Important
“When we lose someone we love, we are left with myriad questions that are difficult to find answers to. We are also sometimes left with a sense of guilt that can contribute to anxiety and depression,” says Bidwell Smith.
This is why it is important to have these conversations while you still have the opportunity.
Pickard explains that reminiscing is a powerful way to remember that you are living and how you have lived.
“When you have these conversations with your parents, you will never regret it,” she says.
She goes on to say, “It’s those conversations with your parents that provide the most nutrition for you when you’re grieving. Those are the conversations that are going to stand out in your mind and provide you with the most comfort.”
Cheryl Maguire holds a Master of Counseling Psychology degree. She is married and is the mother of twins and a daughter. Her writing has been published in The New York Times, National Geographic, Washington Post, Parents magazine, Healthline, Your Teen Magazine, and many other publications. She is a professional member of ASJA. Find her at Twitter @CherylMaguire05.
Expert Tips on How to Care for an Aging ParentBy CHERYL M AGUIRE
Courtney, age 34, was awoken by a loud thud on Christmas morning. She sprinted to the source of the sound, only to find her mother, age 55, lying on the living room floor next to the couch. She began to panic when she saw the pool of blood beneath her.
Courtney’s mother had an 8-inch laceration in her shin from hitting it on the wheel of her walker due to swelling from lymphedema. Because her mother was diabetic, wound care was critical. Courtney had to manage it daily. She was also anxious about the possibility of her mother falling again, especially since her mom had spinal stenosis and required care.
These are some of the challenges Courtney experiences being a caregiver to her mother.
According to the Bureau of Labor Statistics, there are over 40 million people in the United States who provide unpaid eldercare. A recent survey by the Pew Research Center found that most adult caregivers provide help with errands, housework, or home repairs and over half also offer emotional support.
Caring for an adult parent can be challenging, but others have also found this job to be rewarding. Experts and adult
caregivers offer the following advice to people who are struggling with their role caring for their adult parents.
Start Discussions about Care Early
No one wants to think about needing care when they are older, but the best time to discuss this issue is when you don’t need it.
“It is important to develop a future care plan with family and/or friends so that you can express your future wishes in care,” says Dr. Lisa Hollis-Sawyer, gerontology program coordinator and professor at Northeastern Illinois University. You can also prevent conflict among family members by creating a care plan that everyone agrees with before the stress of needing one is added to the situation.
“By having difficult conversations with your parents before there is a crisis, you can avoid most issues that cause problems,” says Dr. Gayle Byck, founder and principal advocate of In Tune Health Advocates.
Create Advance Directives
Once you start discussing care options with your parents,
you should also make sure that all legal paperwork is completed, such as healthcare power of attorney (HCPOA), a living will, and financial power of attorney.
“It is a gift to yourself and to those you love to make your wishes known and designate someone to carry them out for you,” says Byck. Her website, intunehealthadvocates.com, has link s to end-of-life planning information.
Another reason to create these documents is to save money if care becomes necessary.
“If you don’t have the proper documents in place, like a healthcare proxy or power of attorney, instead of caring for an aging parent, you will be in court paying costly fees to get permission to make decisions, probably fighting with your family, and wasting valuable time,” says Renee Fry, CEO of Gentreo Family Vault
Delegate Responsibilities among Family Members
If you have siblings or other family members who can assist with caregiving, then assigning specific tasks will help ease the process for everyone involved.
“Consider holding a family meeting to discuss and identify the needs of the parent and how family members or close friends might be able to contribute their time and resources,” says Dr. Rebecca Cowa n, counselor and professor at Walden University.
Hollis-Sawyer explains that when you create clear expectations of care duties to other people involved with caring, it will help you feel less overwhelmed and burned out. The “rules of care” will also prevent caregivers from feeling burdened.
“Set weekly appointments to discuss what you are experiencing as a caregiver and your associated caregiver needs. The opportunity to share your feelings with others can help alleviate feelings of anxiety and potentially boost physical and mental health,” says Hollis-Sawyer.
Learn about Benefits
Your parents may be entitled to benefits that would help cover the cost of care. If your parent was in the military, then they may qualify for VA Aid (va.gov/pension/aid-attendancehousebound).
“Be sure your parent is receiving the benefits they are entitled to. One example is the VA Aid and Assistance program, which is not widely known,” says Angie Szumlinski, director of risk management for Health Cap Risk Management and Insurance.
“These programs provide financial support for seniors to enable them to pay for assistance with the care that their children are currently providing. Don’t be afraid to ask for help; there are tons of resources available to seniors, but you have to ask.”
Corporations sometimes offer benefits for eldercare. You can ask about benefits at your place of work or research information on the website Families and Work Institute, which is a nonprofit organization (familiesandwork.org). AAR P has a Medicare Resource Center that explains eligibility and provides a question-and-answer tool.
Providing care for your parent usually involves keeping track of doctor’s appointments, medications, and maintaining hygiene. Being organized will help everyone involved in caretaking be less stressed and accomplish their given job.
Suzanne Asaff Blankenship, author of the book How To Take Care of Old People Without Losing Your Marble s, explains that organization is the best defense for the stress and frustration of eldercare.
“When the inevitable emergency occurs, being organized helps to keep you out of panic mode,” she says.
Hollis-Sawyer discusses types of technology that help with organization.
“You can use phone apps, home voice technology (like Amazon Alexa), and other computer programs (an Excel spreadsheet) to help streamline care activities with others,” she says. “You can also use self-care reminders like the Calm phone app.”
If your parent has memory issues or you need to repeat the same activities numerous times, then your patience will be tested.
“It is important to have patience. If you feel yourself losing your patience, such as constantly repeating yourself or having to do a task over and over, you need to step back and regroup,” says James Colozzo, author of the book You Got To Do What You Got To Do: My Experience As A Caregiver Taking Care Of My Parents For Over Twenty Years.
“Go outside, take a deep breath, and get some fresh air or take a little walk so you can settle down. Never push it to the limit where you lose your patience and start to yell; that can turn into a bad situation,”
Asaff Blankenship says, “You should realize that eldercare is a marathon, not a sprint. You will need various tools in your tool bag throughout the journey.”
Focus on the Rewards
Caring for your parent gives you the chance to develop a stronger relationship with them. Hollis-Sawyer explains that when you provide care for your parent, it is an opportunity to show younger generations in the family how to engage in caregiving activities.
“Try to focus on the positive aspects of your daily care activities. Changing the schema of caregiving tasks from a negative to a positive perspective can help reduce your feelings of anxiety, guilt, and stress that can overshadow the great accomplishments you are achieving in others’ lives through your care efforts,” says Hollis-Sawyer.
Cheryl Maguire holds a Master of Counseling Psychology degree. She is married and is the mother of twins and a daughter. Her writing has been published in The New York Times, Parents magazine, AARP: The Magazine, Healthline, Your Teen Magazine, and many other publications. She is a professional member of ASJA. You can find her on Twitter @CherylMaguire05
Reducing the Risk of Falling Some Tips for Your Home and Health to Avoid a Potentially Serious Spill
Did you know that almost one-third of those over age 65 experience a fall each year, and that the incidence increases to 50% by age 80?
Falls are the primary cause of injury and hospitalization for older adults, and half of those injured do not regain their former level of independence. Even more sobering, falls are the seventh leading cause of death in people aged 65-plus.
The majority of falls by seniors take place at home while they are carrying out everyday activities. Most often they occur in the bathroom, bedroom, or a stairwell.
Health- and age-related changes that contribute to falls include arthritis, decreased sensation in the feet, loss of strength, visual impairment, balance problems, and the use of certain medications.
The other major cause of falls is hazardous conditions in the home environment. Fortunately, there are numerous ways to reduce these hazards for yourself or a loved one. Many involve little or no cost.
In the Kitchen
Keep regularly used pots, dishes, staple foods, and other supplies within easy reach. Ensure the heaviest items are stored in the lower cupboards.
If you must reach high places, get a step stool that has a high handrail and rubber tips. Never use a chair.
In the Bedroom
Situate a lamp within easy reach of your bed. Keep a flashlight on hand in case of a power failure.
Keep a phone at your bedside. If your bedroom doesn’t have a phone jack, keep the receiver of a cordless phone with you at night. A cellphone within arm’s reach works too. (Don’t forget to recharge both in the morning.)
Ensure there’s a clear path from your bed to the bathroom.
In the Bathroom
Have grab bars installed by the toilet and in the bathtub or shower area. Ensure they’re placed in the proper location and well anchored to the wall.
Use a rubber mat (the kind with suction cups) in the tub or
shower and a non-skid bathmat on the floor. Get a bathtub seat or shower chair.
Obtain a raised toilet seat if you have trouble getting on and off the toilet.
Get a handheld shower head so you can shower sitting down.
Steps should be in good repair and have a non-skid surface. Have solid handrails installed on both sides of stairways — ideally these should project past the top and bottom steps. Keep steps free of clutter.
Ensure stairwells are well lit. If necessary, get battery-powered dome lights that easily attach to the wall.
General TipsBy LISA M. PETSCHE r
Wear slippers or shoes that fit snugly, offer good support, and have a non-skid sole.
Ensure throw rugs and scatter mats have a non-skid backing. Better yet, remove them, since they’re a common cause of falls. Keep walkways clear of electrical and telephone cords. Avoid clutter in rooms and hallways.
Post emergency numbers by the telephone for easy access. Sign on with a personal emergency-response service, whereby you wear a lightweight, waterproof pendant or bracelet that has a button to press if you run into a crisis and need help.
Use nightlights in the bedroom, hallways, and bathroom. Get the kind that have a built-in sensor that automatically turns the light on in dim conditions. Also consider getting one or more plugin, rechargeable flashlights that automatically come on when the power goes out.
Visit a medical supply store or peruse their catalog to discover the many items available — for example, reachers and electriclift armchairs — that can increase household safety and make everyday activities easier.
Consider a cane or walker if balance is an ongoing problem.
More Than Staffing, More Than DécorBy JEFFREY BELLOMO, ESQ., AND M EG MOTTER , LCSW
When a family begins to consider alternatives to remaining at home, the project seems daunting. Learning about the alternatives — personal care (PC) home, assisted living facility (ALF), memory care, skilled nursing facility (SNF), secure dementia care — requires time and energy. Tackling the project is best started before you need the higher level of care (LOC) and yes, even if you are firmly committed to keeping your loved one at home.
It is difficult to know the future, and promises made to Mom or Dad that you will “never put them in a nursing facility” often shift as the individual’s medical and behavioral management needs change. Be open to learning about the options, even if you are confident you won’t need them — a neighbor, fellow parishioner, or colleague may benefit from your research. It is important to consider all long-term care options, not only the SNF level.
Years ago, folks who could not remain at home as they aged simply went to the Old Folks’ Home. Medicare rules have changed and more options have become available, and within the options, there are many nuances.
Choosing the highest level — SNF — is by far the costliest option, and in our post-pandemic world, finding long-term SNF beds is challenging. Our firm prides itself on helping families not only secure the financial resources needed for services (such as Medicaid with asset protection), but also on helping families determine exactly what level of care might be best for their loved one.
Before assuming that placement is your only option, review the home-based options to be confident your loved one’s needs cannot be managed there. Have you explored adding privateduty caregivers and had a frank conversation with Mom and Dad about their financial resources and ability to pay for such care?
Have you investigated the Pennsylvania Community Options Waiver program and spoken with a certified elder law attorney about whether you can qualify financially for waiver supports?
If all community-based/in-home options and services have been explored and placement is determined to be necessary, first consider PC and ALF options. There are differences between the two, but for our purposes here, they are negligible. The
professionals at both will help to determine whether your loved one qualifies for their specific LOC.
Some have several sublevels, determined by exactly how much help the resident requires — the lighter the needs, the lower the cost; the heavier the needs, the greater the cost. Options range in cost from about $3,000/month to upwards of $6,000-$8,000/month in some.
Spending a couple of hours exploring the websites connected to the facilities that interest you can be helpful in creating a list of the specific places you want to tour. Remember that Medicare and Medicaid/Medical Assistance do not pay for this level of care, unfortunately.
Find out if Mom and Dad have a long-term care policy that can help with funding. If either served in the military (even if the spouse is no longer living), visit your local Veterans Affairs Office to determine if they qualify for the VA Aid & Attendance program. Applying can be cumbersome and approval can take months, but the benefits are well worth the effort. Otherwise, private funds must be used, often a combination of the resident’s monthly income and savings.
After determining that their long-term care needs can only be met at the SNF level — or that their finances are such that they will need to apply for Medicaid or prefer to do so in connection with asset-protection options allowed by Pennsylvania laws — your SNF search begins. The first step is to begin the financial application process, ideally through a certified elder law attorney who can submit the Medicaid application on their behalf while protecting their savings and assets.
Gathering information from the Medicare.gov website about SNF ratings and past inspections is helpful. Neighbors’ opinions about their experiences are well intentioned, but the best way to choose an SNF is to visit several times (including on weekends when staffing is different) and explore the personalities and perks of each.
Try to look beyond the physical structure and age of the building. Ask questions about activities, stability of staffing, and some of the special perks offered. One of our clients looked forward to regular visits with his SNF’s beloved guinea pig, “Leo”!
It is critical to have their financial power of attorney and healthcare power of attorney in place prior to admission. Be sure to get them done while they still have their mental faculties in order, so that when they do need someone to make financial and/or medical decisions for them, the documents are in place.
Waiting is risky, particularly if their capacity changes unexpectedly and they are no longer able to clearly state their personal wishes. Be sure to have the documents drafted by a certified elder law attorney to ensure the documents provide for provisions such as asset protection, long-term care planning, and digital planning. Doing so allows for the family to be able to provide the best possible care for loved ones. Additional important considerations are a last will and testament and perhaps a revocable or irrevocable living trust.
It is also recommended that you speak with your financial advisor or other trusted professional throughout the process the help address the financial pieces of the puzzle. Remember that once admitted, the resident’s income will go directly toward SNF care, minus a personal needs allowance of $45/month. How much do you have to spend down to?
If there is a spouse remaining in the home, a formula is used to determine how much of the resident’s income can remain with the spouse to ensure their needs are met. There are many aspects to consider, and our team can educate and assist you and yours on the journey toward securing the very best care for your family.
Jeffrey R. Bellomo, Esquire, is a Certified Elder Law Attorney, has been certified as a member of The Lawyers of Distinction and teaches attorneys across the country the legal-technical aspects of estate planning and elder law. Meg Motter, LCSW, is the client care and team lead for the firm’s Life Care Planning program. At Bellomo & Associates, LLC, our mission is to provide clients with peace of mind so that their families never needlessly suffer. Our goal is to offer tailored advice and have the client’s best interests at heart.
Be open to learning about the options, even if you are confident you won’t need them — a neighbor, fellow parishioner, or colleague may benefit from your research.
5 Tips to Cope with Caregiver StressBy M ADHAVI V EMIREDDY
Being appointed a caregiver for an older adult can change one’s life completely, whether that person is a parent or you are not related.
The needs of aging adults exponentially increase as they grow older. Often, the person in charge of their care is simply an untrained family member who is given the role because of proximity and nothing more.
There’s a distinct learning curve to caregiving that must be navigated in a short time as the needs of the person you are caring for increase.
People in midlife often deal with being part of the “sandwich generation,” caring for children and aging parents simultaneously.
Stress and burnout are bound to occur amid a caregiver situation. Here are five tips to help a caregiver cope with the stress of this challenging situation.
1. Recognize the signs. It’s a wellknown platitude that the first step to getting help is admitting you have a problem. The same holds for recognizing when you’ve reached burnout level.
Fatigue is the first “symptom.” To keep up with a grueling schedule, caregivers are often not allowing themselves enough sleep. This will eventually catch up to a person, leading to other health issues like depression, anxiety, and susceptibility to illnesses.
It can help caregivers to have an accountability partner they trust, someone who will remind them to get proper sleep and take care of themselves.
2. Create personalized action plans. Every caregiver’s journey is different. You may live with the person you care for. Maybe your loved one is in assisted living, and you are working in tandem with a care team.
Whatever your situation may be, a personalized action plan can help you stay organized and on task with decision making. Your personalized plan can include daily schedules, end-of-life plans, and the person’s wishes.
Documenting needed information and organizing thoughts and needs can alleviate anxiety about the unknown.
3. Products for daily tasks. When you are thrust into a caregiver role without having experience in a professional sense,
you may not be aware of the myriad products available to assist with the activities of daily living. Many of these items are available to rent through durable medical equipment (DME) companies or are covered by Medicare.
Products include medical alert buttons/ necklaces, chair and bed alarms (to prevent falls), adaptive clothing, and more professional-level devices like Hoyer lifts and sit-to-stand lifts.
Take advantage of training offered through DME companies that provide
some of the more complicated products, such as lifts. Once a caregiver learns how to use these products appropriately, they can be invaluable (and save your back!).
4. Resources for support. You cannot pour from an empty cup. Caregivers need support. That’s a given. Your local Aging and Disability Resource Center (ADRC) may offer support groups, classes, or access to helpful products.
Self-care is a necessity. Something as simple as allowing time for a midday nap or having a visiting nurse come in once a week to give the caregiver a day off can stave off burnout by allowing much-needed rest.
Organizations specific to your loved one’s illness can also offer support in the way of education and direction to assistance.
5. Set clear boundaries. It can be easy for a caregiver to feel taken advantage of, especially if they have siblings or other family members who are not participating in the caregiving as much as they maybe should be.
When it is clear that regular caregiving is necessary, clear boundaries need to be put in place from the outset. These include when the caregiver will be available and when they will not be, how much the caregiver will do in terms of care, and the scope of the job beyond the care of the loved one. Is the caregiver expected to clean the house? Grocery shop?
These are all talking points that need to be explicitly indicated. This can prevent resentment and anger later on.
Caregiving is a challenge many of us will face in the future, as our parents or other loved ones grow older and need more attention. Keeping a plan in place and allowing time to care for yourself will make the experience not fraught with anxiety and stress but with memories made and time spent together.
Madhavi Vemireddy is the COO and cofounder of CareTribe (caretribe.com). This digital platform combines advanced analytics, personalized pathways, and human experts to help people get the support they need for their caregiving journey.
Why a Person Living with Later-Stage Dementia Startles So Easily
Let’s explore why people living with late-stage dementia startle easier and the importance of positive approach strategies for caregivers to better support those living with dementia.By VALERIE FEURICH, PAC TEAM M EMBER
Have you ever noticed that a person living with late-stage dementia seems easier to startle? There are a few reasons why that might be happening.
As the dementia progresses, no matter whether it’s Alzheimer disease, vascular or frontotemporal dementias, or dementia with Lewy bodies, the brain’s processing power is slowing down significantly.
How does that affect the person? And what do you need to do differently in these later stages? Read on to find out.
What Happens to the Brain
To say it simply, every dementia begins with chemical changes that lead to structural changes in the brain. For a true dementia, at least two parts of the brain are actively dying. And the further along the person is on their dementia journey, the more brain tissue has been destroyed.
Now, think about the fact that our brain processes all incoming sensory information, such as what we see, touch, or hear. How do you think these processes are affected when the areas of the brain responsible for them are slowly dying?
If you said “they likely won’t function as they used to,” you are correct. As different parts of the brain become affected, sensory processing will slow significantly.
However, that doesn’t mean you can’t connect with the person any longer. It just means that you need to connect differently and adjust your approach to fit their abilities.
What You Need to Do Differently
So, we just established that the brain’s processing speed slows significantly.
What that means for you and the person in your care is that if you continue to approach them at the same speed you always did, their chances of getting startled are very high, as their brain can’t
process the incoming information fast enough.
Here are five important things for you to keep in mind:
1. Pay attention to the person’s visual field. One of the areas affected by the brain’s changes is a person’s visual field. As the condition progresses, it will shrink significantly.
For a person living in the Ruby GEMS State, part of Teepa Snow’s dementia stage-classification system that allows care partners to use a positive approach, the visual field is reduced to monocular vision.
What Does that Mean?
Try it out yourself: Close one eye, and wrap one hand around the other eye so it forms a tunnel to look through.
Now, look around. How much can you still see to your right or left? If someone stood next to you, would you be able to see them without turning your head?
How much do you notice what’s above or below you? If you said “a lot less than usual,” you got it.
So next time you approach a person living in a Ruby State, be conscious of their very narrowed visual field. Ask yourself: “Where is the person looking? Can they see me?”
If you think they can’t, adjust your position. If the person is looking down, try very slowly moving your hand into their visual field and see if they respond.
2. Slow down. And I mean, really slow down. Remember the processing speed we talked about earlier? When approaching a person living in late-stage dementia, you’ll want to slow down — a lot.
As an example, let’s say the person living with dementia is looking down. You just slowly moved your hand into their visual field, but the person doesn’t seem to respond right away. How long did you wait?
Depending on where the person is in their condition, it can take six seconds or more for them to respond. Be patient! Wait, and give the person time to process what they’re seeing and to respond.
3. Do one thing at a time. In addition to needing more processing time, the person will also likely be unable to focus on more than one thing at a time.
Let’s say the person noticed your hand and reached out to hold it. You may be excited you got a response, but be cautious not to rush into the next step too soon. Since the person can only focus on one thing at a time, this may cause them to get startled.
Instead, if the person is reaching out to take your hand, give them time to connect and see if they’ll raise their head to look at you.
4. If they’re not responding, try getting their attention by using their name. Let’s say you moved your hand into the person’s visual field and waited, but the person does not respond. At this point, you may want to try saying their name once in a nice and soft tone of voice to get their attention.
As human beings, we’re all wired to respond to our name. A name is one of those emotion-filled words that stay with a person, even if they’re living with late-state dementia.
5. Be intentional with your tone of voice and rhythm of speech. As you learned earlier, the brain’s abilities decline as the dementia progresses. However, it is crucial to recognize that this does not affect all abilities and that you can use the ones that remain to connect with the person.
As an example, even in later-state dementia, people can pick up on rhythm
and tone of voice. Try connecting with music the person has always liked and be mindful of your tone as you speak to them. Soft and gentle is the way to go.
As a person’s brain becomes more and more affected by dementia, their abilities will change. As their care partner, you will want to change your approach alongside them.
Next time you approach a person living in the later states of dementia, remember their narrowed visual field. Be sure to slow it down and give them time to process. Take it one step at a time, and be intentional with your tone of voice or rhythm of speech as you’re trying to connect.
The person may not be able to respond the way they used to, but there are still options to connect if you take the time and keep your eye out for opportunities.
P.S. Did you pick up on a small language shift during this article? If you noticed I started the article calling them dementia stages and shifted to dementia states instead
as the text progressed, great job!
Why did I switch this wording, you wonder? Simple. A stage implies a set way of being. However, the human brain experiences multiple fluent states throughout the day.
Think about it — does your brain work the same way when you first wake up as it does during the rest of the day? Likely, you’re experiencing different levels of energy and ability. This applies to all brains, no matter if they’re living with dementia or not. Therefore, here at Teepa Snow’s Positive Approach to Care, we refer to them as dementia states instead.
Curious to learn more? Check out Teepa Snow’s Positive Approach to Care on YouTube!
Valerie Feurich is a Positive Approach to Care® (PAC) team member. PAC, founded by renowned dementia care educator Teepa Snow, is a dementia-care education company specializing in improving lives by empowering caregivers with highly effective, hands-on care skills and techniques. To learn more, please visit teepasnow.com or contact info@teepasnow.
Frequently Asked Questions
Is there someplace I can get help with drug bills for someone in my care? Who is eligible for PACE?
• You must be 65 years of age or older.
• You must be a Pennsylvania resident for at least 90 days prior to the date of application.
• You cannot be enrolled in the Department of Human Services’ Medicaid prescription benefit.
For a single person, total income must be $14,500 or less. For a married couple, combined income must be $17,700 or less.
Prescriptions: Copay for generic drugs is $6; copay for single-source brand is $9.
Who is eligible for PACENET?
• You must be 65 years of age or older.
• You must be a Pennsylvania resident for at least 90 days prior to the date of application.
• You cannot be enrolled in the Department of Human Services’ Medicaid prescription benefit.
PACENET income limits are slightly higher than those for PACE. For a single person, total income can be between $14,500 and $33,500. For a married couple, combined total income can be between $17,700 and $41,500.
Prescriptions: Copay for generic drugs is $8; copay for single-source brand is $15. Call your local Area Agency on Aging office for forms or for more information or go to https://pacecares.magellanhealth. com.
Effective Jan. 1, 2023, PACENET cardholders not enrolled in a Part D plan will pay a $41.08 premium at the pharmacy each month they use their PACENET benefit.
Income qualification is based on prior year’s income and includes taxable and nontaxable sources. Assets and resources are not counted as income.
– Pennsylvania Department of Aging
What is the Medicare Savings Program (MSP)?
The Medicare Savings Program helps pay for Medicare premiums. In some cases, the Medicare Savings Program may pay Medicare Part A (hospital insurance) and Medicare Part B (medical insurance) deductibles, coinsurance, and copayments if a beneficiary meets certain conditions. QMB, SLMB, and QI are part of the program.
Qualified Medicare Beneficiary (QMB): The income limit is $1,235 a month if single and $1,663 a month if married. QMB pays for Part A and B cost sharing, Part B premiums, and – if a beneficiary owes them – it also pays their Part A premiums.
Specified Low-Income Medicare Beneficiary (SLMB): The income limit is from QMB levels up to $1,478 a month if single and $1,992 a month if married. SLMB pays for Part B premiums.
Qualified Individuals (QI): The income limit is from SLMB levels up to $1,660 a month if single and $2,239 a month if married. QI pays for Part B premiums. Provides financial assistance with Medicare Part D prescription drug coverage (monthly premiums, deductibles, and drug costs).
MSP asset limits: The asset limits for QMB, SLMB, and QI are $9,090 if single and $13,630.
For information, call (800) 633-4227.
What is the Medicaid spend-down program for regular Medicaid for the aged, blind, and disabled benefits and LTSS?
Individuals with incomes too high to qualify for Medicaid for the aged, blind, and disabled can enroll in Pennsylvania’s Medicaid spend-down. This program allows applicants to qualify for Medicaid by subtracting medical and long-term care expenses.
When an applicant enrolls in the Medicaid spend-down, the state determines the amount of their income
that is above the income limit; this is known as “excess income.” Enrollees activate their coverage by submitting medical bills equal to this amount.
Pennsylvania usually approves spenddown benefits in six-month increments, with additional coverage requiring new medical expenses be submitted.
In Pennsylvania, the Medicaid spenddown program covers long-term services and supports.
Income eligibility: The income limit is $425 a month if single and $442 a month if married.
Asset limits: The asset limit is $2,400 if single and $3,200 if married.
For information, call (866) 550-4355.
– American Council On Aging
What are Medicare Preventive Services?
Early detection and treatment of health conditions can help reduce medical costs and maintain health. Many preventive care services are covered at a low or no cost. Talk to your doctor about preventive services available to you through Medicare.
What is the Extra Help Program?
Extra Help is a federal program that helps pay for prescription costs, premiums, deductibles, and coinsurance of Medicare prescription drug coverage for qualified beneficiaries. It is also known as the Part D Low-Income Subsidy (LIS). Persons may become eligible if certain requirements are met:
• You have Medicare Part A (hospital insurance) and/or Medicare Part B (medical insurance).
• You live in one of the 50 states or the District of Columbia.
• Your resources (excluding your primary residence) are not worth more than $33,240 if you are married and living with your spouse or $16,630 if you are not currently married or not living with your spouse. (Do not count your home, vehicles, personal possessions, life
insurance, burial plots, irrevocable burial contracts, or back payments from Social Security or SSI.) If you have more than those amounts, you may not qualify for Extra Help. However, you can still enroll in an approved Medicare prescription drug plan for coverage.
If you have Medicare and Supplemental Security Income (SSI) or Medicare and Medicaid, you do not have to apply for this extra assistance because you will automatically get Extra Help.
If your loved one becomes eligible, you can call (800) 772-1213, TTY (800) 325-0778, or visit Medicare.gov for more information.
What is PA MEDI (formerly APPRISE) and where can I get more information?
The PA MEDI Program is a free program operated by the Area Agencies on Aging to provide healthinsurance counseling and assistance to Pennsylvanians age 60 and over. They can help you understand Medicare benefits by explaining Medicare, Medicare supplemental insurance, Medicaid, and long-term care insurance.
Program counselors can explain the Medicare appeals process, help you select a Medigap insurance policy, explain the Medicare prescription Part D benefit, and explain financial assistance programs. Call (800) 783-7067 or your local Area Agency on Aging for more information.
What is the difference between home care and home healthcare?
Home care agencies (HCAs) and home care registries (HCRs) provide nonskilled services to individuals in their homes or other independent living environments. Home care services include:
• Assistance with self-administered medications
• Personal care (assistance with personal hygiene, dressing, and feeding)
• Homemaking (housekeeping, shopping, meal planning and preparation, and transportation)
• Respite care (assistance and support provided to the family)
• Other nonskilled services
Home healthcare is a wide range of healthcare services that can be given in
your home for an illness or injury. Examples of skilled home health services include:
• Wound care for pressure sores or a surgical wound
• Patient and caregiver education
• Intravenous or nutrition therapy
• Monitoring serious illness and unstable health status
What is the difference between a nursing home and a personal care home?
Nursing homes are licensed medical facilities that are inspected and licensed by the Pennsylvania Department of Health. They must meet both state and federal regulations. There is third-party reimbursement (Medicare and Medicaid) for those who qualify based on income.
Personal care homes are residential facilities that offer personal care services, assistance, and supervision to four or more persons. They are inspected and licensed by the Pennsylvania Department of Human Services.
A personal care home must have a license to operate in Pennsylvania. There are state licensing regulations that apply to personal care homes. These regulations are aimed at protecting the health, safety, and well-being of the residents.
There are no federal regulations for personal care homes. There is no thirdparty reimbursement for personal care homes, but many accept residents of low income who receive Supplemental Security Income (SSI).
What is the difference between a personal care home and an assisted living community in Pennsylvania?
Many people frequently confuse the two to mean the same thing, which was pretty true until 2011. Personal care homes are for individuals who want to remain independent yet have supervision and help with daily living activities. An assisted living community allows its residents to age in place longer, often making it unnecessary for them to move to a nursing facility.
Specializing in dementia care for adults and their families
Qualifying for Medicare Home Health
Dear Savvy Senior,
How does Medicare cover in-home healthcare? My husband has a chronic health condition that makes it very difficult for him to leave the house, so I’m wondering if he could qualify for Medicare home healthcare.
– Seeking Help
Medicare covers a wide variety of part-time or intermittent in-home healthcare services to beneficiaries in need, if they meet Medicare’s criteria. Here’s how it works.
In order for your husband to secure coverage for home healthcare, Medicare first requires that he be homebound. This means that it must be extremely difficult for him to leave home, and he needs help doing so either from another person or a medical device like a cane, wheelchair, walker, or crutches.
However, it doesn’t mean that your loved one can never leave home. Occasional trips for medical appointments or to the barber or a religious service are permitted.
He will then need to have a face-to-face meeting with his doctor to get a home health certification confirming that he needs skilled-nursing care or skilled-therapy services from a physical or speech therapist on a part-time basis.
His doctor can also request the services of an occupational therapist and a personal care aide to assist with activities of daily living, such as bathing, dressing, and using the bathroom. His doctor must renew and certify his home health plan every 60 days.
If he meets all of the requirements, traditional Medicare will cover 100% of his home healthcare needs. Home healthcare is skilled-nursing or skilled-therapy services. If, however, you have a Medicare Advantage plan, you will need to check to see what is covered and at what rate.
You can locate a Medicare-certified home health agency by calling 800.633.4227 or by visiting medicare.gov/care-compare. And you always have the right to choose a home healthcare agency that you prefer that is certified by Medicare and should not feel forced to use a particular agency.
But be aware that Medicare will not pay for home care or homemaker services, such as bathing, dressing, using the bathroom, shopping, meal preparation, cleaning, etc., (also known as personal care aide services) alone if he does not need home healthcare services,By JIM MILLER r
plan directly and ask which home health agencies work with the plan and are within the plan’s network of providers.
For more detailed information on how Medicare covers inhome health, see the “Medicare and Home Health Care” online booklet at Medicare.gov/Pubs/pdf/10969-Medicare-and-HomeHealth-Care.pdf.
If your husband does not qualify for Medicare home healthcare coverage, there are other coverage options, depending on your situation. Here are several that may apply to you:
Insurance: If you happen to have long-term care insurance, check to see if it covers in-home care. Or if you have a life insurance policy, see if it can be utilized to pay for care.
Medicaid: If your income is low, your husband may qualify for Medicaid, which offers different home and community-based services that can pay for in-home care. To investigate this, contact your local Medicaid office.
Also see if PACE — which stands for “Programs of AllInclusive Care for the Elderly” — is available in your area (see NPAonline.org). PACE provides in-home care, including help with activities of daily living, such as meals, dental care, and medical care, among other benefits.
Veterans benefits: If your husband is a veteran, the VA also offers some benefits that can help. Two programs to inquire about are “Aid and Attendance or Housebound Allowances” and the “Veteran-Directed Care” program. Both programs provide monthly financial benefits to eligible veterans that can help pay for in-home care. To learn more, contact your regional VA benefit office (see benefits.va.gov/benefits/offices.asp or call 800.827.1000).
To look for these and other programs in your area that can help pay your husband’s home care, visit Paying For Senior Care online (payingforseniorcare.com) and click on “Find Financial Assistance for Care” to access their Eldercare Financial Assistance Locator tool.
If he has a Medicare Advantage plan, you should contact his
Caregiver Support Programs
There are approximately 53 million people who provide unpaid caregiving to family members throughout the year. Americans are living longer, and as the population ages, the number of caregivers will also continue to rise in the coming years.
Caregivers are an essential element in our healthcare system and, according to AARP, they account for over $600 billion worth of unpaid labor in the U.S.
Caregiving already has become the new norm for many, as we find ourselves helping loved ones who are disabled, frail, or suffering from Alzheimer’s disease, Parkinson’s disease, and kidney and liver diseases, which have been on the rise.
Some research has shown that men are increasingly stepping up in the caregiving responsibilities, but women are still more
Benefits & Services for Caregivers
• Assessment of caregiver and care recipient needs
• Respite care
• Training in caregiving skills
• Financial assistance to purchase caregiving-related supplies or services
• Limited funding for assistive devices and home modifications
• Benefits counseling on services available through local, state, and federal programs
• Referrals to family support or disease-specific organizations, such as Children of Aging Parents or the Alzheimer’s Disease & Related Disorders Association
• Assistance in completing benefits and insurance forms
If you are age 18 or older and the primary caregiver* of a functionally dependent person who is age 60 or older, you may be eligible for assistance.
If you are age 18 or older and the primary caregiver* of an individual of any age with Alzheimer’s disease or a related disorder, you may be eligible for assistance.
If you are age 55 or older and the primary caregiver* of a relative who is under age 18 or a relative age 18 –59 with a non-dementia-related disability who lives with you, you may be eligible for assistance.
*A primary caregiver is the one identified adult family member or other responsible person who has primary responsibility for the provision of care — including coordination of care and services — needed to maintain the physical and/or mental health of the care receiver. The caregiver may not receive reimbursement for personally providing caregiving services to the care receiver and must be actively involved with various aspects of care on a regular — but not necessarily daily — basis.
For specific program information, please contact your local Area Agency on Aging or visit the Pennsylvania Department of Aging’s website at www.aging.pa.gov.
likely to provide basic care (e.g., help with dressing, feeding, and bathing), while sons are more likely to provide financial assistance.
The major focus of the Pennsylvania Department of Aging’s Caregiver Support Program is to reinforce the care given to adults aged 60 and older with functional deficits, individuals with Alzheimer’s disease, or other related disorders, as well as grandparents and other relatives aged 55 and older who are raising grandchildren or caring for related adults with disabilities.
To determine the needs of both the caregiver and receiver, the package of benefits begins with an assessment. You could also take advantage of other benefits available, such as counseling, education, and financial information.
(Federal and State)
Caregiver must reside in the same household as care receiver.
Caregiver must be related to the care receiver.
Household income of care receiver is used to determine eligibility.
Care receiver must require assistance with at least one activity of daily living (ADLs).
Maximum amount of monthly reimbursement for caregiver expenses and with documentation to justify need (depending on the caregiver’s reimbursement percentage) is:
Maximum amount of reimbursement for home modification/assistive devices (lifetime cap based on purchases, subject to the caregiver’s reimbursement percentage) is:
Caregiver must have primary responsibility for the provision of care and be actively involved with various aspects of the care receiver’s care on a regular — but not necessarily daily — basis.
**Unless care receiver is 18–59 years of age with a non-dementia-related disability, or the caregiver is 55 years of age and older caring for a child under age 18.
***Must be related by blood, marriage, or adoption if the care receiver is 18–59 years of age with a non-dementia-related disability, or the caregiver is 55 years of age and older caring for a child under age 18.
****ADL requirement does not apply if the caregiver is 55 years of age and older caring for a child under age 18. (The caregiver cannot be the biological parent of the child.)
Tips for Being a Long-Distance CaregiverBy JIM MILLER
Dear Savvy Senior, What tips do you recommend for long-distance caregivers? I help take care of my stubborn 86-year-old mother who still lives at home about 150 miles from me.
– Need Advice
Providing care and support for an aging parent who lives far away can present a variety challenges that can make the job difficult and stressful. Here are some tips and resources that may help you.
When it comes to monitoring and caring for an aging parent from afar, you have a couple of options. You can hire a professional to oversee your mom’s needs, or you can manage things yourself by building a support system, tapping into available resources, and utilizing technology devices that can help you keep tabs on her.
If your mom needs a lot of help, you should consider hiring a geriatric care manager, who will give her a thorough assessment to identify her needs and will set up and manage all aspects of her care.
Geriatric care managers typically charge between $100 and $250 per hour after an initial assessment of $150 to $750. However, the care manager helps with things such as coordinating government assistance, insurance, and other benefits; coordinating and monitoring service providers; monitoring and advocating for medical needs; and more.
To find a geriatric care manager in your mom’s area, call your Area Agency on Aging or contact Eldercare Locator at 800.677.1116 or email at eldercarelocator@USaging.org to see if they have a list of providers.
If, however, your mom only needs occasional help, or you can’t afford to use a care manager, here are some things you can do yourself to help her.
Create a care team: Put together a network of people (nearby friends or family, neighbors, clergy, etc.) who can check on your mom regularly, and whom you can call on from time to time for occasional help. Also put together a list of reliable services you can call for household needs like lawn care, handyman services, plumber, etc.
Tap local resources: Most communities offer a range of free or subsidized services that can help seniors with basic needs, such as home-delivered meals, transportation, senior companion services, and more. Contact your Area Aging Agency to find out what’s available.
Use financial tools: If your mom needs help with her financial chores, arrange for direct deposit for her income sources, and set up automatic payments for her utilities and other routine bills. You can also set up her online banking service, so you can pay bills and monitor her account anytime.
Or, if you need help, hire a daily money manager (try the American Association of Daily Money Managers at aadmm.com) to do it for you. They charge between $25 and $100 per hour.
Check essential documents: This is also a good time to make sure your mom has the following essential legal documents: a will; a living will and healthcare proxy, which allows you to make medical decisions on her behalf if she became incapacitated; and a durable power of attorney, which gives you similar legal authority
for financial decisions, if needed.
If she doesn’t have these documents prepared, now is the time to make them. And if they are prepared, make sure they’re updated and know where they are located.
Hire in-home help: Depending on your mom’s needs, you may need to hire a part-time home-care aide who can help with things like preparing meals, housekeeping, or personal care. Costs can run anywhere from $12 up to $25 per hour.
Utilize technology: To help you keep tabs on your mom from afar, there are various technologies that can help. For example, there are medical alert systems, video camera monitors, wearable activity trackers, and electronic pill boxes that can notify you if she has taken her medications.
Check-in apps: If your mom uses a smartphone, a great solution to help ensure her safety is Snug (snugsafe.com), a free app that would check in on her every day to confirm she’s OK.
Here’s how it works. After downloading the app, your mom will choose what time(s) throughout the day she’d like Snug to check in. Snug will send a push notification at those times asking your mom to check in by tapping the big green check button on her smartphone screen. If she doesn’t check in within 10 minutes or respond after multiple pings, Snug will notify her emergency contacts and share her last known location so she can receive fast help.
Check-in calls: If your mom doesn’t use a smartphone, another option to help ensure her safety is a daily check-in call-service program. Certain home care agencies provide this service for a fee. There are also companies you can work with that will do periodic check-ins to make sure your loved one is safe. Search “daily checkin calls for seniors” and add your city and state.
Alert devices: You may also want to invest in some simple technology aids to keep your mom safe. One of the most commonly used devices for this is a medical alert system that cost about $1 per day. These systems come with a wearable “help button” that would allow her to call for help 24/7.
Voice assistants: Another option that’s becoming increasingly popular is smart speakers, like Amazon Alexa or Google Home. These devices work with third-party applications that would let your mom contact all multiple emergency contacts with a simple verbal command. Check out Ask My Buddy Personal Alert Network at askmybuddy.net and My SOS Family at mysosfamily. com.
For more tips, call the National Institute on Aging at 800.222.2225 and order their free booklet, “Long-Distance Caregiving: Twenty Questions and Answers.”
How to Choose and Use a Walking CaneBy JIM MILLER
Dear Savvy Senior,
My mom has some hip and back problems and could use a walking cane to help her get around. Is there anything I should know about canes before I buy one for her?
– Limping Linda
When it comes to choosing a cane, most people don’t give it much thought, but they should. Walking canes come in many different styles, shapes, and sizes today, so you need to take into account your mother’s needs and preferences to ensure you choose one that’s appropriate for her. Here are some tips that can help.
Types of Canes
The first thing you need to consider is how much support she needs. That will help you determine the kind of cane you choose. The three basic types of canes you’ll have to choose from include:
1. Straight canes: These are basic, single-point canes that typically incorporate a rounded “crook” handle or “L-shaped” ergonomic handle. Usually made of lightweight aluminum or wood, most of the aluminum models are adjustable in height, and some even fold up.
2. Offset-handle canes: These also are single-point straight canes but come with a swan neck curve in the upper part of the shaft that puts the user’s weight directly over the cane tip for added stability. These canes are typically aluminum, adjustable-height, and come with a flat, soft grip handle that’s easy on the hands. Some straight canes and offset-handle canes also come with triple- or quad-tipped bases that can add gripping support and allow the cane to stand up on its own when you let go, which is very convenient.
Both straight and offset-handle canes are best suited for people with a slight walking impairment.
3. Quad canes: These work best for people who need maximum weight bearing and support. Quad canes come with four separate tips at the base. They usually have an offset flat handle and can stand up on their own.
Fitting the Cane
Once you (and your mother) decide on the type of cane, you need to make sure it has the weight capacity to support your mother and that it fits her height. To do this, have your mother stand up with her arms hanging straight down at her side. The top of the cane should line up with the crease in her wrist, so her arm is slightly bent at the elbow when she grips the cane.
The cane should also have a rubber tip at the bottom to prevent slipping. A worn or torn rubber tip is dangerous, so check the tip frequently to ensure it’s in good condition, and replace it when necessary.
The grip is also very important, so choose one that’s ergonomically designed or one that has a molded rubber or foam grip that’s comfortable to hold on to.
If she travels much, consider getting a folding cane that can be packed or stored away easily.
How to Use
When using a cane, it should always be held in the hand opposite of the leg that needs support. For example, if her knee pain is on her left side, your mother should use the cane in her right hand. The cane should then move forward as she steps forward with the bad leg.
If you have to go upstairs, she should lead with the good leg. And when she goes downstairs, she should put her cane on the step first and then step down with her bad leg. Sturdy handrails are very important for persons with mobility issues.
The Mayo Clinic offers a slideshow at mayoclinic.com/health/ canes/HA00064 that will show you and her how to choose and use a cane. It’s also a smart idea that she works with a physical therapist.
Where to Buy
You can buy canes at drugstores, discount retailers, medical supply stores, and online, usually between $10 and $50. You’ll also be happy to know that Medicare covers canes with a written prescription from a physician.
Frontotemporal Dementia – The Most Common Form of DementiaBy SUSAN HIRSCH, MA, CDP
The family of Bruce Willis released a statement in February that the actor was diagnosed with frontotemporal dementia (FTD). Their hope is to increase “awareness and research” for the disease. The media attention has been effective, and more people are asking, “What is FTD?”
FTD is a group of disorders that occur when there is progressive nerve cell loss in the brain’s frontal and temporal lobes. The nerve cell damage impairs the functioning of those lobes. Many possible symptoms can result, including changes in behavior, trouble communicating, or difficulty walking and other motor issues. It also leads to an inevitable deterioration in one’s overall ability to function.
FTD is also frequently referred to as frontotemporal degeneration, frontotemporal lobar degeneration, or Pick’s disease.
FTD is the most common form of dementia for people under age 60. The estimated prevalence in the United States is around 60,000 cases. Length of progression varies from two to more than 20 years. The average life expectancy is seven to 13 years after symptoms begin.
FTD Subtypes and Symptoms
Behavioral Variant FTD (bvFTD)
• Most common form of FTD
• Impacts personality and social behaviors; one may exhibit social disinhibition and display behaviors such as swearing, excessive drinking, repetitive actions, and uncharacteristic hoarding
• Change in eating habits, overeating, or developing a craving for sweets and carbohydrates
• Loss of empathy, such as indifference to an important event, like the death of a family member
• Difficulty problem solving, planning, multitasking, and prioritizing
• Poor judgment or decision-making abilities
• Loss of interest in work, hobbies, personal relationships, and personal hygiene
Primary Progressive Aphasia (PPA)
• Trouble comprehending language, particularly complex sentences
• Struggling to find the correct word, and speech may seem delayed or slurred
• Difficulty with reading and writing, such as following grammar rules
• Inability to recognize people and objects and how they are used
• Uncharacteristically speaking in shorter, simpler sentences
Frontotemporal Movement Disorders, including Progressive Supranuclear Palsy (PSP), Corticobasal Syndrome (CBS), and Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration (ALS-Frontotemporal Spectrum Disorder)
• Symptoms vary based on the type of movement disorder
• Affects involuntary, automatic muscle functions, such as twitching of muscles
• Causes stiffness, beginning in the neck and trunk, and rigidity; one may have difficulty walking due to lack of balance and weakness and experience frequent falls
• Person loses ability to move eyes vertically or horizontally or experiences rapid involuntary eye movements
• Behavioral and emotional symptoms, such as ability to control behaviors, indifference to others, and lack of insight
• Difficulty swallowing, controlling face and mouth muscles, and breathing
• Unable to carry out desired movement, and difficulty completing familiar tasks
Diagnosis of FTD
• There is no single test that can diagnose FTD with certainty
• Takes an average of 3.6 years to obtain an accurate diagnosis
• FTD is frequently misdiagnosed as Alzheimer’s disease, depression, Parkinson’s disease, or a psychiatric disorder
• Diagnosis includes tracking of symptoms and family history
• Examples of testing include blood tests, lumbar puncture, test for obstructive sleep apnea, neuropsychological evaluations, and brain imaging such as MRI, CT scan, FDG-PET, and SPECT scan
There is currently no cure for FTD and no treatments to slow or stop the progression of the disease. There are behavioral/ environmental approaches and medications, however, that can help manage symptoms.
When seeking a resource, such as a therapist, physician, or memory care community, inquire whether the person/community has FTD knowledge/experience.
Behavioral Variant FTD (bvFTD)
• Avoid overstimulation (limit noise, bright light, number of people and distractions)
• Use simple, specific questions; do not argue or try to rationalize
• Maintain the individual’s schedule/routine (posting the schedule may be helpful)
• Provide a safe environment, removing items such as sharp objects; address hoarding behaviors
• Be aware of personal space, allotting at least an arm’s length when providing care
Primary Progressive Aphasia (PPA)
• Create a communication notebook/board; include photos with names of people and objects
• Use gestures and drawings
• Initiate tasks, provide step-by-step instructions, and create a checkoff list
• Provide successful engagement activities based on the individual’s past interests and current abilities
• Store lists of words or phrases in a computer or phone to point to
• Consult with physical, speech, and occupational therapies for assessment and interventions (positive resources for all FTD subtypes)
• Limit distractions while eating and dressing
• Provide a safe, clutter-free environment
• Adapt clothing, such as Velcro shoes and pullover sweater
• Encourage exercises, such as range of motion and balance exercises
What to Expect as a Caregiver
For caregivers, it is necessary to understand the behavioral, language, and motor changes of persons living with FTD. The personality changes, and the individual’s lack of awareness of symptoms, can be particularly stressful. A person living with FTD may struggle to speak or converse normally. He or she may become forgetful and restless or experience rapid mood swings as the disease advances. The person may also experience movement issues and frequent falls.
A caregiver may need to provide emotional and physical support, as well as encouragement. Knowing how to balance a person’s safety and independence becomes more challenging as the disease progresses. Because of the variety of challenges, it is recommended for the caregiver to find their own emotional support.
The Association for Frontotemporal Degeneration (theaftd.org) provides valuable resources, including additional approaches, publications, legal and financial considerations, FTD medical centers, ongoing research, and support groups.
Susan Hirsch is the manager of dementia services for ProMedica Senior Care assisted living/personal care communities. The communities (Arden Courts and Linden Village) provide specialized memory care services for individuals with various types of dementias, including FTD. For more information, visit arden-courts.org. She is also a member of the AFTD Partners in Care Committee and an AL/PC board member of the Pennsylvania Health Care Association. PHCA is a statewide advocacy organization for Pennsylvania’s most vulnerable residents and their providers. The members include for-profit and nonprofit skilled nursing facilities, personal care homes, and assisted living residences. Collectively, PHCA represents more than 450 long-term care and senior service providers and more than 100,000 elderly and disabled individuals. For more information, visit phca.org.
Since 1995, On-Line Publishers, Inc., a multi-title, niche-publishing, and event-production company, has effectively reached boomers, seniors, caregivers, and elder care professionals with award-winning publications and events.
50plus Life, formerly 50plus Senior News, is a monthly newsprint magazine for and about the 50+ community. Editions in Chester, Cumberland, Dauphin, Lancaster, Lebanon, and York counties.
50 plus Living
caregiver solutions is distributed throughout south-central PA and is available at our expos. It offers invaluable information to the person managing the care of a loved one and includes a directory of housing, care, and service providers.
50plus Living is an annual guide to residences and care options available to boomers and seniors in the Susquehanna and Delaware valleys.
is a source for information about local products, services, and support for the community. Now included as “yellow pages” in 50plus Life
Racing against the Shadow of Alzheimer and Dementia: The Complete 2023 Care Giving and Support GuideBy Milton Tucker Print; eBook
If you are currently caring for someone with Alzheimer’s disease or another kind of dementia, or if you are thinking about doing so, this book is for you.
It is meant to serve as your unique roadmap for an adventure you have never had before. Even if you have experience looking after others in other ways, such as child rearing, teaching, managing staff, or other duties, taking on the role of an Alzheimer’s caregiver will provide you with challenges you never thought possible.
Before you realize it, you too will have undergone a permanent shift as a result of having been a caregiver to someone with this condition. Its symptoms will alter continuously and gradually before your own eyes. In ways that will be described throughout the book, you could even experience a shift for the better.
The Caregiving Crisis: What it Costs Your Business and How You Can Fix ItBy Debbie Howard Print; eBook
The Caregiving Crisis gives you the fasttrack perspectives you need to support caregivers in your business and lower your costs while you do it. Here, you’ll find a clear view of best practices and how to:
• Identify and engage with the different types of caregivers in your company
• Establish KPIs for evaluating program performance going forward, building in risk assessment and prevention
• Repurpose existing HR and EAP training programs
• Acknowledge and reward your employee caregivers
• Create a forward-thinking strategy based on your unique company culture
How to Cope and Move Forward with Alzheimer’s: A Comprehensive Guide to Understanding and Managing the Disease and Reclaiming Hope in the Face of a Growing EpidemicBy Dr. Heather Brown Print; eBook
Alzheimer’s disease is a cruel and relentless thief that robs its victims of their memories, their independence, and ultimately, their lives.
Yet, it doesn’t have to be an immediate death sentence. With the right care, support, and understanding, those living with Alzheimer’s can enjoy a meaningful and fulfilling life.
In this book, you’ll learn how to:
• Recognize the signs and symptoms of Alzheimer’s
• Prevent and manage the challenges of the disease
• Provide the best possible care for your loved one
You’ll also learn:
• How Alzheimer’s disease occurs
• How Alzheimer’s disease is diagnosed
• How Alzheimer’s disease affects the brain and nervous system
• How Alzheimer’s disease affects the family
• How Alzheimer’s disease typically progresses
• The difference between Alzheimer’s disease and dementia
With heartfelt stories from caregivers and sufferers, you’ll gain the empathy and
understanding to join the fight against Alzheimer’s disease and make the most of each day.
When Your Aging Parent Needs Help: A Geriatrician’s Step-byStep Guide to Memory Loss, Resistance, Safety Worries, & MoreBy Leslie Kernisan, M.D.; Paula Spencer Scott Print; eBook
It’s scary and stressful when it happens … noticing changes in your parent and becoming increasingly worried about their health and safety. Maybe it’s Mom leaving the stove on, Dad getting lost on his way home, or unpaid bills that trigger this realization. Or perhaps there have been falls or emergency room visits.
Whatever it is, you know something’s wrong. You wonder about a diagnosis. And you want your aging parent to accept help or perhaps move.
Helping an older parent can be gratifying. But it’s especially hard if they’re blowing off your concerns, refusing to make changes, or otherwise resisting your efforts. You want them to listen, but they get upset or withdraw when you try to talk about this. What to do?
You don’t have to remain stuck in conflict with your parent (or other family members). You don’t have to keep getting the runaround from doctors or feel stumped about next steps. Instead, use an expert’s clear plan on how to help your aging parent.
In this practical, step-by-step guide, geriatrician Leslie Kernisan, M.D., walks you through what to do and what to say in order to offer respectful assistance and intervention to a declining elderly parent.
Full of actionable advice and insider tips, When Your Aging Parent Needs Help provides practical and flexible steps that move concerned families toward effective elder care action, while respecting a parent’s dignity and autonomy.
• How to communicate with your aging
parent to reduce conflicts and enhance cooperation
• The A-B-C-D-E assessment framework for Alzheimer or other dementia concerns, safety issues, or independent living — and steps to implement change
• Strategies to overcome parental resistance, health provider reluctance to share information, and family disagreement
• How to get a medical evaluation for memory loss and, if applicable, a diagnosis for Alzheimer’s disease or another dementia
• What to know about possible mental “incompetence,” powers of attorney, HIPAA, and other options for gaining legal authority as a caregiver
• How to find geriatric care managers and other eldercare professionals to assist
• Downloadable worksheets, symptom checkers, and checklists to bring to doctor visits
• “What this looks like” family stories that show you what these action steps look like in real-world situations
A Tattoo on My Brain: A Neurologist’s Personal Battle against Alzheimer’s DiseaseBy Daniel Gibbs; Teresa H. Barker Print;
Dr. Daniel Gibbs is one of 50 million people worldwide with an Alzheimer’s disease diagnosis. Unlike most patients with Alzheimer’s, however, Gibbs worked as a neurologist for 25 years, caring for patients with the very disease now affecting him. Also unusual is that Gibbs had begun to suspect he had Alzheimer’s disease several years before any official diagnosis could be made.
Forewarned by genetic testing showing he carried alleles that increased the risk of developing the disease, he noticed symptoms of mild cognitive impairment long before any tests would have alerted him. In this highly personal account,
Gibbs documents the effect his diagnosis has had on his life and explains his advocacy for improving early recognition of Alzheimer’s disease.
Weaving clinical knowledge from decades caring for dementia patients with his personal experience of the disease, this is an optimistic tale of one man’s journey with early-stage Alzheimer’s disease.
My Aging Parent Needs Help!: 7-Step Guide to Caregiving with No Regrets, More Compassion, and Going from Overwhelmed to OrganizedBy Cynthia Kaye Print; eBook; Audiobook
While every situation is different, there are certain common elements that most family caregivers share — things like determining living arrangements, managing medical treatments, organizing a caregiving schedule, and figuring out how to pay for it all.
Equipped with the right information, you’ll have fewer sleepless nights and less worrying that Dad left the stove on again or that Mom has slipped in the shower with nobody nearby to help.
This step-by-step guide walks you through practical tips and actions on how to become an organized and informed caregiver. It also helps you maintain balance while providing compassionate care with no regrets.
In My Aging Parent Needs Help!, you will discover:
• Resources that provide financial and other support for the elderly and their caregivers (note: most resources are U.S. focused)
• Practical checklists and templates that will enable you to go from “overwhelmed” to “organized”
• The single most important thing to becoming an amazing caregiver that most people overlook
• How to navigate long-term care and
housing options that make the most sense for you and your loved one
• A simple tip that can calm your agitated parent and create an instant sense of connection
• The pitfalls of hiring paid caregivers directly rather than through an agency
• Strategies on how to give compassionate care with less stress and more peace of mind
• Straightforward advice on how to maintain boundaries and balance in your own life
• Tips on how to maintain caregiver selfcare from a holistic mind-body-spirit point of view
Even if you know nothing about eldercare or you think you’re a disorganized person, you can become an organized and capable caregiver and maintain your sanity at the same time.
For the Love of Tom: A Caregiver’s Survival Guide of Faith, Hope, and LoveBy Anita M. Yelton eBook
Who is a caregiver? Individuals who care for another person who cannot care for themselves: those afflicted with dementia, Alzheimer’s disease, cancer, birth defects, accident victim, stroke, heart attack, surgery, and other conditions and diseases.
The caregiver is the lifeline for their loved one. They are the voice, advocate, heart, and the able-bodied one all too willing to lend their strength to another in time of need.
This book is written from Anita M. Yelton’s perspective as a caregiver for a loved one with dementia, but most, if not all, of these chapters and tips could be applied to a caregiver with a loved one experiencing a variety of disabilities or illnesses.
325 Wesley Drive
Mechanicsburg, PA 17055
Bethany Village is a not-for-profit retirement community. Numerous residential options are available as well as assisted living, memory support, and skilled nursing services.
See ad on page 15
Chapel Pointe at Carlisle
770 South Hanover Street
Carlisle, PA 17013 www.chapelpointe.org
1901 North Fifth Street firstname.lastname@example.org
Harrisburg, PA 17102 HomelandCenter.org
Homeland Center, a continuing care retirement community, offers beautiful personal care suites, skilled nursing, rehabilitation, and dementia care. Our community outreach programs serve counties throughout the south-central Pennsylvania region, and include Hospice, HomeHealth, and HomeCare.
See ad on page 5
Senior LIFE York
1500 Memory Lane www.seniorlifepa.com York, PA 17402
Senior LIFE is a state and federally funded Medicare and Medicaid program that provides long-term care for seniors 55+ so that they can remain living at home.
See ad on page 21
StoneRidge Retirement Living Communities
Kristine Tobias, Director of Independent Living & Sales 440 East Lincoln Avenue email@example.com
Myerstown, PA 17067 www.stoneridgeretirement.com
Mission driven, full-service continuing care retirement community with a history of almost a century of exemplary care. See ad on back page
1840 East Market Street firstname.lastname@example.org York, PA 17402 www.visitingangels.com
Providing in-home, non-medical care to older adults in York, Lancaster, and Hanover. Specializing in dementia care for adults and their families.
Homeland Hospice, HomeHealth,
See ad on page 17
717.857.7400 and HomeCare
2300 Vartan Way, Suite 270 HomelandatHome.org
Harrisburg, PA 17110
Homeland at Home, a community outreach of Homeland Center, provides a continuum of At Home care services—from nonmedical personal assistance to wound care, teleheath monitoring, and physical and occupational therapy, as well as compassionate hospice care.
See ad on page 5
Patriot Home Care
208 North Third Street, Suite 200
Harrisburg, PA 17101 www.patriothomecare.org
Patriot Home Care works with state insurance companies to those in need who qualify as low income to provide nonmedical care so that you can stay comfortably in your own home.
See ad on facing page
Providence Place Senior Living
Our age-in-place communities offer independent living, assisted living, and memory care (early or late-stage) in a scenic setting.
See ad on page 13
Home Health Care may be provided in a residential setting or as ancillary services wherever you call home. May be medical home health or non-medical services, such as light housekeeping, transportation to doctor visits, shopping, respite, and more.
Hospice Care is for families living and coping with a life-limiting illness. Hospice provides professional treatment of pain and symptom management with support and counseling.
Assisted Living Residences (ALRS) are designed to provide housing and supportive services to allow residents to “age in place.” As of January 2011, licensure requirements for ALRs became effective.
Adult Day Centers offer programs in facilities or independent organizations for hourly or daily adult supervision.
Nursing/Rehab Facilities offer skilled or intermediate levels of care. Intermediate Care Facilities are for individuals who can move around the facility on their own initiative, even in a wheelchair, and are not bed bound. Skilled Nursing Facilities are for patients who require 24-hour nursing supervision, many of whom are confined to bed for some portion of the day.
CCRCs are communities offering a variety of living options in addition to comprehensive medical and nursing services.
Personal Care Homes offer food, shelter, and personal assistance or supervision. They are ideal for people who do not require the services of a long-term care facility but need help with transferring in and out of a bed, toileting, personal hygiene, and other activities of daily living.
Respite Care provides normal caregiving opportunities on a short-term basis. May range from personal to nursing care, at home or in a care community.
Retirement Communities and 55+ Adult Communities are planned for active individuals who are able to care for their own basic needs but want to live with other 50+ mature adults.
AREA AGENCIES ON AGING
PA 17603 www.lancoaging.org
The Caregiver Support Program provides caregivers with benefits counseling and reimbursement for related expenses and home modifications.
Bellomo & Associates, LLC
Provides service coordination for LTSS (Long-Term Services and Supports) Waiver Program participants in Cumberland, Perry, and Dauphin counties. Dauphin
Dauphin County Area Agency On Aging provides services to older adults who reside in Dauphin County and are age 60 or older.
Meg Motter, Client Care Advocate email@example.com 3198 East Market Street www.bellomoassociates.com York, PA 17402
We understand the sensitive nature of estate planning and elder law. No matter what situation, we provide peace of mind, and we are here to offer legal advice and have your best interests at heart.
Nikolaus & Hohenadel, LLP
Barbara Reist Dillon, Wanda S. Whare firstname.lastname@example.org 212 North Queen Street email@example.com
Lancaster, PA 17603 www.n-hlaw.com
Areas of expertise include: elder law, wills, powers of attorney, living wills, medical powers of attorney, and estate settlement. Offices in Lancaster, Columbia, Elizabethtown, and Quarryville.
— Support and Information —
All About Vision
American Cancer Society
American Diabetes Association
American Speech Language-Hearing Association
American Urological Association
410.689.3700 or 800.828.7866
Caregiver Action Network
Centers for Medicare & Medicaid Services
Christopher & Dana Reeve Foundation
Community Action Network
Crohn’s and Colitis Foundation of America, Inc.
Family Caregiver Alliance
Guide Dog Foundation for the Blind
Medicare Rights Center 800.333.4114
Medicare Telephone Hotline
National Alliance for Caregiving
National Association of Area Agencies on Aging
National Clearinghouse for Long-Term Care Information
National Council on Aging
National Council on Alcoholism & Drug Dependence, Inc.
National Health Information Center
National Institute on Aging Information Center
National Institutes of Mental Health 866.615.6464
National Library Service for the Blind & Physically Handicapped 888.657.7323
National Parkinson Foundation, Inc. 800.473.4636
Office of Minority Health Resource Center
Pennsylvania Department of Human Services
Pennsylvania Department of Military and Veterans Affairs
Senior Law Center
Shriners Hospital for Children Referral Line
Simon Foundation for Continence 800.237.4666
Veterans Administration Caregiver Support Program