Dining with a loved one who has dementia can be both a challenge and an opportunity for connection. Here are a few tips you can use to create a dining environment that supports and comforts them.

1. Simplify the Meal Presentation: Serve one food item at a time or use sectioned plates to prevent overwhelming your loved one with piled up food. Also, remove patterned dishes to reduce anxiety and confusion.

2. Create Color Contrast: Use plates and utensils with contrasting colors to help with food recognition and decision-making. (For example: green beans on a white plate, mashed potatoes on a red plate).

3. Serve Familiar Foods: Offer dishes that your loved one has enjoyed in the past to evoke positive memories and encourage eating.

4. Avoid Serving Stringy or Sticky Foods. These can create swallowing concerns. In the event your loved one experiences any of the signs below during mealtimes, a swallow assessment is recommended to determine if meal changes are warranted (not an all-inclusive list):

• Choking
• Coughing
• Swallowing slowly
• Holding food in mouth
• Refusing to eat

6. Create a Comfortable Environment: Ensure the dining area is comfortable and decluttered, with appropriate lighting and temperature to minimize distractions.

7. Foster Social Engagement: Encourage social interaction during meals. As dining is a social activity, consider eating meals with your loved one to enhance the experience

By implementing these strategies, family caregivers can help their loved ones enjoy meals and maintain a sense of independence. Remember, patience and understanding are key.

When your loved one has been diagnosed with Alzheimer’s Disease or another form of dementia, understanding the disease and identifying the right family caregiver resources can make a world of difference.

Rest assured, SYNERGY HomeCare is here to help you navigate uncharted waters and create peace of mind as you care for your loved one experiencing dementia or memory loss.

Click here to learn more about SYNERGY HomeCare’s Memory Care services or call 877-432-2692.

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SYNERGY HomeCare offers no obligation home assessments. Find a location near you or contact us to learn how we can provide additional support to you and your loved ones.

Dr. Macie P. Smith is a licensed gerontology social worker who is focused on helping families support their aging loved ones through long-term care. Specifically, Dr. Smith educates caregivers on how to care for seniors with dementia. She is an advocate for specialized care and assists others in finding a way to provide a better quality of life for individuals with Alzheimer’s or dementia. Dr. Smith has dedicated over 22 years of her life working in gerontology and assisting families in finding personalized solutions for dementia care. For more articles by Dr. Macie Smith, click here.

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877-432-2692

The post Enhancing Dining Experiences for Those with Dementia appeared first on SYNERGY HomeCare.

Summary:

Here’s how to effectively talk to your older loved one about them needing home care:

• Choose the right moment and environment.
• Lead with love and respect.
• Focus on their goals, not their limitations.
• Explain how home care supports independence.
• Involve the whole family.

There comes a point in life when the roles you have always known begin to shift. Maybe you have already felt it: the moment you start picking up groceries for your mom, organizing your dad’s medications, or joining a parent at doctor appointments “just in case.” At first, these moments are small. But over time, they can grow into bigger responsibilities, and suddenly the balance that once felt so steady begins to tilt. You slowly but surely start transitioning from the “child” role to the “caregiver” role.

It is one of the hardest transitions we go through. Watching a parent age can stir up worry, sadness, protectiveness, and even grief. For your parent, it can be just as emotional. They may feel frustrated by the changes in their own abilities or fearful of losing independence. This is often where the conversation about home care begins, and it is rarely an easy one.

But with compassion, patience, and the right approach, talking about home care can strengthen your relationship and lay the foundation for a safer, more supported future for your loved one.

Understanding When the Shift Happens

For many families, this shift begins when adult children are in their late forties to early sixties. This stage of life is already full, often with careers, children, and financial responsibilities all happening at once. That is why so many people in this age range are part of the “Sandwich Generation,” caring for aging parents and their own children simultaneously.

Sometimes the shift is gradual. Other times, a serious diagnosis such as dementia accelerates everything. Once there is a cognitive change, the daily routine, future plans, and parent-child dynamics can change quickly.

No matter how it unfolds, the emotional weight can be heavy for everyone involved.

The Emotional Side of Becoming the Caregiver

Stepping into a caregiving role brings a wide range of emotions. You may feel love and gratitude, but also frustration, worry, resentment, and guilt. These feelings do not make you a bad son or daughter. They make you human.

What matters is finding ways to process these emotions while protecting your own well-being. A few helpful reminders include:

• Walk beside your parent, not ahead of them. Your parent still values their independence. Involving them in decisions whenever possible helps preserve their dignity and reduces resistance.
• Know your limits. Being honest about what you can and cannot do physically, financially, and emotionally does not mean you are failing your parent. It means you are caring for yourself, too.
• Make a care plan. Having a roadmap that includes family support, professional caregivers, or community services helps you avoid the panic of last-minute decisions.
• Get support. Lean on friends, counseling, or support groups. You do not need to bottle everything up.

Why Many Parents Prefer to Age in Place

Aging in place is becoming increasingly common. According to  AARP, about eighty percent of adults 65 and older prefer to remain in their own homes for as long as possible. The reasons make sense – comfort, familiarity, independence, and the emotional reassurance of staying in a place filled with memories.

Fortunately, home care services make aging in place accessible for more families than ever and can be the bridge that helps you remain connected to your aging parent while allowing them to maintain their independence.

How Home Care Helps Maintain Independence

SYNERGY HomeCare offers programs tailored to each individual because no two aging journeys look the same. A few of the most common types of support include:

Companion Care – Perfect for older adults who are mostly independent but need help with cooking, errands, housekeeping, or transportation. Companion care lightens the load without taking over their routine.

Personal Care – For parents who need help with bathing, dressing, or mobility, personal care provides hands-on support while still allowing them to stay in control of their daily choices.

Respite Care – Supports both the parent and the family caregiver. It gives you time to rest, recharge, and take care of your own needs, while your parent gets reliable care from a friendly, trained professional.

How to Start the Conversation

Bringing up home care is delicate. No parent wants to feel like they have become a burden or lost control of their own life. That is why the way you start the conversation matters as much as the conversation itself.

Here are several gentle yet effective approaches:

• Choose the right moment and environment. Pick a calm, private time when neither of you is rushed or stressed.
• Lead with love and respect. You might begin with: “Mom, can I get your opinion on something I have been thinking about?” or “Dad, can we talk for a few minutes about some ways I want to make things easier for you?”
• Focus on their goals, not their limitations. Frame the conversation around what they want: staying at home, staying safe, reducing stress, or having someone to help with difficult tasks.
• Explain how home care supports independence. Many parents imagine losing control, but professional caregivers actually help them maintain it.
• Involve the whole family. When siblings or close relatives are part of the conversation, it reduces the feeling that one person is “taking over.”

Remember, this is not a one-time conversation. It’s a process that may unfold slowly, but that’s completely normal.

You Don’t Have to Do This Alone

Talking to mom or dad about needing home care can be emotional and overwhelming, but you do not have to navigate it by yourself. SYNERGY HomeCare is here to guide you through the journey with compassion, reliability, and care that honors your parent’s independence and dignity.

If you are ready to explore how home care can support your family, visit synergyhomecare.com or call (877) 432-2692 to learn more.

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SYNERGY HomeCare offers no obligation home assessments. Find a location near you or contact us to learn how we can provide additional support to you and your loved ones.

877-432-2692

The post How to Talk to Your Older Loved One About Home Care appeared first on SYNERGY HomeCare.

Here are some subtle signs of depression in older adults:

• A noticeable sense of sadness, anxiety, or apathy
• Unusual sleeping patterns
• Difficulty concentrating or feeling confused often
• Tearfulness
• Isolating from the family
• Loss of interest in traditions or activities
• Neglecting personal hygiene
• Sudden changes in appetite or weight
• Low energy or unusual fatigue

For many families, the holidays are the one time of year when everyone gathers under the same roof. You share meals, exchange gifts, and catch up on life. But sometimes, in between the laughter and familiar traditions, you notice things you didn’t expect. Maybe your mom seemed quieter than usual. Maybe your dad slept through most of the day. Maybe a grandparent who once lit up the room now seemed distant or withdrawn.

If you visited family this season with a lingering sense that something felt “off,” you’re not alone. These moments often become the first clues that an older loved one may be experiencing depression.

During the aging process, life events, health challenges, and the loss of friends or family can weigh heavily on emotional well-being. According to the National Institute on Aging, depression is a serious condition that affects mood, behavior and thought patterns. It can create ongoing feelings of sadness, apathy or emptiness, often triggered by trauma, loss or health issues.

Depression in older adults is more common than many people realize. About 6 million adults 65 and older are living with depression, yet the signs often get brushed off as just aging, stress, or physical decline. That’s why noticing these early changes matters, especially after the holidays when families have more time to observe their loved ones closely.

Signs You May Have Noticed During Your Holiday Visit

Pay attention to these signs of depression that could occur with your loved one:

• A noticeable sense of sadness, anxiety, or apathy
• Sleeping far more or far less than usual
• Difficulty concentrating or feeling more confused than normal
• Tearfulness
• Isolating from the family or staying in their room
• Loss of interest in traditions or activities they once loved
• Neglecting personal hygiene
• Sudden changes in appetite or weight
• Low energy or unusual fatigue

Seeing these changes can feel alarming but recognizing them is the first step toward helping your loved one regain comfort, confidence, and emotional balance.

This Is Where SYNERGY HomeCare Can Step In

SYNERGY HomeCare understands that caring for an older adult means paying attention to the whole person. Our Total Well-Being program was created specifically to support physical, emotional, and social wellness, all of which play a meaningful role in reducing the effects of depression.

Here’s how the program can support your loved one:

Strengthening Physical Well-Being

Medication Reminders – Consistent routines help reduce stress and confusion, allowing seniors to stay on track with treatments that support their overall health.

Fall and Injury Prevention – Light exercises and mobility support help older adults regain confidence in their bodies. Feeling steady and capable again can lift mood and restore a sense of independence.

Overall Care and Companionship – Personal caregivers assist with daily activities and also provide emotional reassurance and a steady presence. For someone feeling overwhelmed or disconnected, this support can create a sense of comfort and safety.

Supporting Emotional Well-Being

Companion Care – Regular visits from a caregiver offer meaningful connection. Walks, games, and casual conversations help reduce loneliness and bring warmth back into daily life.

Wellness Check-Ins – These timely check-in calls provide reassurance and remind seniors that they’re not alone, even on quieter days.

Mindfulness Exercises – Relaxation techniques such as guided breathing help calm racing thoughts and encourage a more positive outlook.

Building Social Well-Being

Social Engagement – Caregivers help seniors reconnect with family, revive old hobbies, or explore community activities. Staying socially active can strengthen cognitive function and reduce the emotional weight of isolation.

Support for Families, Too

The Total Well-Being program also supports families who may be feeling overwhelmed or unsure of what to do next. Respite care gives families a chance to rest and recharge while knowing that their loved one is in compassionate, capable hands.

If you left the holidays concerned about an older loved one, now’s the time to reach out, ask questions and explore support. Depression is treatable, and early attention can make all the difference.

To learn more about how SYNERGY HomeCare can help your family, take a look at our Total Well-Being guide or call (877) 432-2692.

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SYNERGY HomeCare offers no obligation home assessments. Find a location near you or contact us to learn how we can provide additional support to you and your loved ones.

877-432-2692

The post Recognizing the Signs of Depression After the Holidays appeared first on SYNERGY HomeCare.

Winter weather is beautiful, but for older adults, it often comes with many added risks. From icy sidewalks to cold-related health concerns, seniors need to take extra precautions to stay safe during the colder months. With planning, your loved one can enjoy the season while avoiding unnecessary hazards.

Here are some important winter safety tips for seniors:

1. Dress Warmly Before Heading Outside

As we age, our bodies don’t produce as much heat, and our immune systems may not be as strong. This makes seniors more vulnerable to conditions like hypothermia, pneumonia, and common colds. Before going outside, make sure your loved one bundles up with a warm coat, gloves, a scarf, and a hat to stay protected from the cold.

2. Take Steps to Prevent Falls

Falls are a year-round concern for seniors, but icy sidewalks and snowy driveways increase the risk dramatically in winter. Always keep walkways shoveled and salted before an older adult goes outside. If possible, walk with them and provide support in slippery areas.

3. Prepare for Power Outages

Winter storms can sometimes cause blackouts. Seniors should have a stock of canned foods, bottled water, flashlights, and extra blankets in case the power goes out. Keeping warm without heat can be a serious challenge, so preparing ahead can make a big difference.

4. Make the Home Safer for Winter Living

Weather changes, especially for winter can bring out hidden dangers inside the home, too. If using space heaters, ensure they’re placed away from flammable objects and never left unattended. Clear dryer vents and gutters to reduce fire risks. Create a safer living space during the winter months.

5. Arrange Help for Outdoor Tasks and Errands

Snow shoveling, grocery shopping, and running errands can be difficult for aging adults in winter. Having someone to help with snow removal or pick up essentials is an important part of planning ahead. This makes seniors not feel isolated while staying safe at home.

Winter can be one of the most challenging seasons for older adults, but with preparation and support, it doesn’t have to be unsafe. From bundling up and preventing falls to preparing the home for hazards, small steps can make a big difference.

At SYNERGY HomeCare, our caregivers can help seniors stay safe and comfortable all winter long, whether it’s providing companionship indoors, assisting with daily tasks, or ensuring a loved one has the support they need during cold weather.

Call us today at 877-432-2692 or visit SYNERGY HomeCare to learn more about how we can support your loved one this winter season.

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SYNERGY HomeCare offers no obligation home assessments. Find a location near you or contact us to learn how we can provide additional support to you and your loved ones.

Dr. Macie P. Smith is a licensed gerontology social worker who is focused on helping families support their aging loved ones through long-term care. Specifically, Dr. Smith educates caregivers on how to care for seniors with dementia. She is an advocate for specialized care and assists others in finding a way to provide a better quality of life for individuals with Alzheimer’s or dementia. Dr. Smith has dedicated over 22 years of her life working in gerontology and assisting families in finding personalized solutions for dementia care. For more articles by Dr. Macie Smith, click here.

 877-432-2692

The post Winter Safety Tips for Seniors appeared first on SYNERGY HomeCare.

While it can feel difficult to start conversations about care during such a festive season, the truth is that the holidays can be the perfect time to explore home care.

The Care Needs That the Holidays Can Reveal

After spending months apart, it becomes much easier to recognize signs that a loved one may be struggling with things such as:

• Difficulty moving around the house
• Difficulty with basic housekeeping
• Poor nutrition from missing meals or neglecting a balanced diet
• Forgetfulness or confusion
• Isolation or withdrawal from their social circles

While these warning signs aren’t a reason for immediate alarm, they should still serve as valuable reminders that your loved one could benefit from additional support.

Why Starting Home Care Now Makes Sense

Introducing home care services during the holidays can feel much more natural and supportive rather than overwhelming. Families can:

• Ease into care together: Being around your family can prove that you’re there to support them and make the transition more comfortable.
• Relieve stress: Both the extended family and the person receiving care can feel more at ease knowing that needs are being met.
• Provide companionship: Caregivers can offer a similar type of companionship that a family member can offer, even after the holiday season ends and life pulls everyone apart.
• Set the stage for the new year: Starting home care at the top of the new year can feel like a fresh start and create a smooth path for 2026 and beyond.

The most important gift that you can give your loved ones is peace of mind. By exploring home care services, such as those offered by SYNERGY HomeCare, families can enjoy the holiday season and the new year knowing that their loved one is supported, safe, and well cared for.

If you or a loved one is interested in tapping into the home care services offered by SYNERGY HomeCare this holiday season, visit https://synergyhomecare.com/home-care-services/ or call 877-432-2692.

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SYNERGY HomeCare offers no obligation home assessments. Find a location near you or contact us to learn how we can provide additional support to you and your loved ones.

 877-432-2692

The post Home for the Holidays, Home Every Day: Why the Holiday Season Can Be the Perfect Time to Start Home Care appeared first on SYNERGY HomeCare.

Writer Denise Brown

This article originally published on Nextavenue.org

The holidays are a time for gathering and spending quality time with family members we don’t often see. It may also be the first time you notice a change in their health, such as their pace and mobility.

According to the U.S. Census Bureau, the most common disability facing older Americans is mobility. It’s also one of the most common side effects of illnesses of people of all ages.

My family and I recently helped my mom with her mobility challenges and found a solution that has improved her safety and her well-being. You can make a big difference in the lives of your aging family members by facilitating an open and caring conversation about your concerns.

Has Mobility Become an Issue?

The following questions can help you determine if mobility is becoming a challenge for your aging family member:

• Does your family member complain about mobility? Having trouble getting around may start to disrupt a person’s quality of life.
• Does your family member talk about being less active and missing out on activities? Loss of mobility can lead to loneliness and isolation.
• Do you notice a change in your family member’s pace? Slowing down is one of the first signs of mobility loss.
• Do you notice that your family member is increasingly bumping into things? Loss of balance or coordination are important signs to note.

If you notice one or more of those challenges, it’s time to ask about it. Mobility loss can quickly lead to other health ailments, including obesity, frailty, hypertension, arthritis and mental health-related challenges. If you are concerned, be sure your family member sees their doctor to ensure the mobility loss is not part of an underlying health condition.

As I found in my family, the best approach to raising these concerns is through a direct, respectful and loving conversation. During a regular check-up, my mom’s doctor suggested she begin using a walker rather than her cane to help her balance issues. My mom felt that using a walker full-time meant she had to go out into the world with a sign that she needed help. For her, that was devastating.

I first focused on validating how she felt. That opened the conversation to what we could do about it. We then began a discussion about options, which moved our focus from the problem to finding the right solution.

What Type of Walking Aid Will Work Best?

The use of a mobility aid, like a walker and rollator (a rolling walker with a seat), can be a simple, lasting solution. Yet, if you’re not familiar with the category, you may wonder where to start.

When shopping for a mobility aid, keep in mind:

• Does your family member want to get back to an active lifestyle? Consider an aid that folds easily and can be stored in a car or public transportation.
• Does your family member have an older spouse or a relative in a caregiver role? A lightweight option may be important for easy transport.
• Does your family member enjoy shopping or running errands that require merchandise? Having accessory options that can connect to the device is a key consideration.
• Does your family member spend time waiting for a bus or an Uber or Lyft ride? A walker with a built-in seat can help provide a comfort factor.
• Does your family member value products that reflect their style and personality? There are models that can be highly personalized, with sleek style options and vibrant colors.

New Options Combine Function and Pleasing Design

Recent market innovations have completely changed our perception of what a walker can represent. What was once a sign of dependence can now be a symbol of empowerment. My mom recently discovered an option that reflects her desire to remain as independent as possible.

We found a high-quality lightweight walker with a modern design. It has a sleek look that reflects my mom’s ready-to-live attitude, which gives her hope. And I get peace of mind that she’s safe. My dad isn’t drained from having to help my mom stay upright. And my mother is proud to show it off (strangers regularly compliment her) which means she’s out of the apartment, walking more and walking safely — both huge benefits for her.

During this holiday season, you may find yourself worrying about your family member’s safety. The best way to help is to start a conversation. The sooner you have it, the sooner you can help your family member take the right steps to moving with confidence.

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SYNERGY HomeCare provides care that supports people of all ages and abilities. Our caregivers provide companionship and support that keep people moving and thriving. Find a location near you or contact us to learn how we can provide additional support to you and your loved ones.

 877-432-2692

The post How the Topic of Mobility Could Come Up This Holiday Season appeared first on SYNERGY HomeCare.

1. Watch for Signs of Confusion

Holidays bring a lot of excitement and rehashing of old memories, but for some older adults this can pinpoint memory or cognitive issues. If you notice your loved one seems confused, forgets plans easily, or has trouble following along, it could be more than just “holiday stress.” Pay attention and consider visiting a doctor if concerns continue.

2. Keep Meals Nutritious and Safe

Holiday treats are everywhere, but don’t forget to make sure your loved ones have fresh, healthy food in the fridge and pantry. Double check there aren’t any expired items or skipped meals. Loss of appetite and sudden weight changes may point to health concerns that shouldn’t be overlooked.

3. Prevent Falls and Accidents

Holiday decorations, crowded living rooms, and icy sidewalks can increase the risk of falls. For older adults, even a small fall can be serious. Make sure pathways in the home are clear and have good lighting, and take extra caution on stairs or rugs. These small acts can make a big difference.

4. Create a Calm and Comfortable Space

With family, decorations, and noise, the holidays can feel overwhelming, especially for loved ones with dementia. A quiet, familiar room is good to have when things get overstimulating. Keep decorations simple and avoid overly cluttered spaces or loud holiday displays.

5. Watch Over Emotional Well-Being

The holidays can sometimes bring sadness, stress, or loneliness for older adults. Watch for signs of emotional changes, like withdrawal, irritability, or sudden mood swings. Sometimes, just sitting together in peace can be the best gift.

6. Share Caregiving Responsibilities

Family gatherings are a great time to share caregiving roles. Don’t leave the responsibility to just one person, rotate duties so everyone gets to enjoy the holiday while making sure your loved one’s needs are met.

With a little planning and awareness, the holidays can be joyful and safe for older adults. By keeping routines in mind, watching for warning signs, and creating a comfortable space, you can ensure your loved one feels included without being overwhelmed.

At SYNERGY HomeCare, we know the holidays can be both wonderful and challenging. Our caregivers are here to provide support that helps families focus on what matters most: making lasting memories together. Call us today at 877-432-2692 or visit SYNERGY HomeCare to learn how we can support your loved one at home this holiday season.

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SYNERGY HomeCare offers no obligation home assessments. Find a location near you or contact us to learn how we can provide additional support to you and your loved ones.

 877-432-2692

The post 6 Holiday Safety Tips for Older Adults at Home appeared first on SYNERGY HomeCare.

Disability Looks Different for Everyone

No two people experience disability in the exact same way. Even if two people share the same diagnosis, their needs, strengths, and daily experiences can be very different. Disabilities are often grouped into categories such as physical, developmental, intellectual, and sensory, but every individual’s journey is unique. Recognizing and honoring these differences helps create more supportive communities.

Words Matter

The way we talk about someone’s disability is important. You might hear someone refer to themselves as a “person with a disability” (person-first language) or a “disabled person” (identity-first language). Both are valid, and the best choice is to follow the preference of the person you are speaking with.

Some words, however, should be avoided. Terms like “handicapped,” “impaired,” or “crippled,” are outdated and can be hurtful. That said, some disabled people may reclaim these words for themselves. If you hear this, it is their choice, but it is not appropriate for non-disabled people to use those terms. On a related note, terms like “differently abled” or “handicapable” may sound positive, but some feel those terms are unnecessary and that there is nothing wrong with the word “disability.”

The best approach is to just ask how someone prefers to be recognized and honor their choice, that way, you’re being respectful to everyone’s preferences.

Understanding Ableism

Ableism is discrimination, prejudice, or exclusion based on disability. It stems from the false belief that people without disabilities are better or more valuable than disabled people.

Ableism shows up in big and small ways:

• A building without ramps or wheelchair accessible bathrooms
• Assuming a disabled person cannot succeed at work or school
• Speaking to a caregiver instead of directly to the disabled individual
• Treating someone as “inspirational” for simply living their daily life
• Dismissing needed accommodations as “special treatment”

These actions may seem subtle, but they exclude and harm. Challenging ableism starts with awareness and choosing to see disabled people as equals with the same rights, potential, and dignity as anyone else.

How Families and Caregivers Can Help

Families play an important role in creating an empowering environment for their loved ones with disabilities. Here are some meaningful ways to offer support:

• Educate yourself – Learn about the disability, its challenges, and its strengths.
• Listen to disabled voices – Follow advocates, read their stories, and include their perspectives.
• Use respectful language – Follow the lead of the individual on how they want to be identified.
• Encourage independence – Provide opportunities for decision-making and self-advocacy.
• Promote inclusion – Choose accessible activities and spaces where everyone can participate.
• Challenge stereotypes – Speak up when you hear assumptions or myths about disability.
• Celebrate the little things – Focus on what your loved one can do and the joy they bring to the world.

Moving Toward Inclusion

What people with disabilities want you to know is simple: they want to be seen, heard, and respected as individuals, not defined by assumptions, limitations, or stereotypes. Disability is not a tragedy or something to “overcome.” It is one of many ways of experiencing life.

At SYNERGY HomeCare, we are committed to supporting individuals and families by fostering dignity, independence, and inclusion. To learn more about how to best support someone living with a disability, take a look at our Guide To Understanding And Supporting Adults With Disabilities or call (877) 432-2692.

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SYNERGY HomeCare offers no obligation home assessments. Find a location near you or contact us to learn how we can provide additional support to you and your loved ones.

 877-432-2692

The post What People with Disabilities Want You to Know appeared first on SYNERGY HomeCare.

Writer Beth Baker

This article originally published on Nextavenue.org

Planning for our own death or that of a loved one is difficult. According to a survey by The Conversation Project, 92% of us think it’s important to discuss our end-of-life wishes. Yet only one-third of us do so.

For those with intellectual and developmental disabilities (IDD), those conversations happen even less frequently.

“Death in general is still a taboo subject,” says Dr. Kyle Sue, at the University of Alberta, who treats people with developmental disabilities of all ages. “For people with a disability, health practitioners don’t know how to bring it up, or they don’t know how much the person will understand. There’s a level of discomfort in trying to include them.”

IDD includes conditions that appear before the age of 18 that affect physical development, learning, language or behavior. Some conditions begin in utero, such as Down syndrome which is caused by an extra chromosome. Others are from a birth injury, such as cerebral palsy. One common disability, Autism Spectrum Disorder (ASD), likely has multiple causes and may not appear until after age one.

An estimated 1-3% of Americans have IDD conditions, according to Margaret Nygren, CEO of the American Association on Intellectual and Developmental Disabilities (AAIDD). Improvements in heart surgery and other advances have greatly extended the lives of many.

Most notably, the average life expectancy for people with Down syndrome is now 61, compared to just 25 years old in 1983. Children with cerebral palsy are also living longer. A study in BMC Neurology found that 80% of children with mild CP will live to be 58 or beyond. Although this is good news, it presents new challenges as individuals outlive their parents or other caregivers.

Diseases associated with aging, such as Alzheimer’s disease, are becoming more common, especially for those with Down syndrome. Some 30% of people with Down syndrome in their 50s have Alzheimer’s, and 50% of those in their 60s.

Having conversations about end-of-life wishes is important while the individual can communicate.

Nothing About Them Without Them

Charlotte Woodward defies stereotypes regarding people with Down syndrome and other disabilities. As is common in Down syndrome, she was born with a heart defect and has had four open-heart surgeries including a heart transplant — one of the few people with Down syndrome to receive an organ transplant.

Woodward studied sociology at George Mason University, concentrating on discrimination against people with disabilities in the medical system, and she is now only the third person with Down syndrome to be a registered lobbyist. She works to advance the Charlotte Woodward Organ Transplant Discrimination Prevention Act, introduced by Washington State Republican representative Jaime Herrera Beutler and California Democrat Katie Porter.

“I’m still in my thirties. I want to live my life to the fullest,” says Woodward, who is Education Programs Associate with the National Down Syndrome Society. Still, “I’ve thought about the end of my life. I know for a fact that I won’t be in denial of it. I won’t be angry or bargain. I would flat out accept it. Maybe I’ll give my body to science. And I would like to get my last will and testament in place and advance medical directive as well.”

Her mother, Darcy Woodward, 58, finds such conversations difficult. “There’s definitely a concern about the future among parents of children with disabilities. We’re trying to make sure things are in place to protect our children who will hopefully have long healthy lives. I try not to think about it, but I know it’s important.”

In the past, someone like Charlotte would not have a seat at the table when it came to planning her health care. But in the 1980s that began to change, explains Leigh Ann Kingsbury, a North Carolina gerontologist who wrote one of the first guides on end-of-life planning for people with IDD.

People with disabilities who receive Medicaid-funded services must have an annual plan for their care. “Up until the ’80s these planning processes were really perfunctory — professionals getting together and saying ‘here is what we think is best for Susie Jo’ in a highly patronizing, not culturally relevant manner,” says Kingsbury.

That began to change when advocates demanded that their voices be included. In the 1990s, the slogan “nothing about us without us” became a rallying cry in the disability community.

Advanced Directives

“People with IDD can and do create advanced directives for their care,” says Nygren. “The thing that’s different is they need some help discussing and thinking through the options, the way people without IDD can do it independently.”

But many medical professionals and caregivers are reluctant to include people with IDD in decision making. “I never met a person with IDD who didn’t understand the cycle of life,” says Nygren. “People aren’t automatically comfortable about it, but there’s awareness. People want autonomy and control over decisions that affect them. Actually, the most respectful thing you can do is to give them the opportunity to express their wishes.”

According to Nygren, the number of those with extreme intellectual limitations who cannot understand or speak is small, compared to the overall population of people with IDD. Even then, people who know them well know their likes and dislikes that can help inform care.

Dr. Brian Chicoine has been medical director of the Adult Down Syndrome Center in Illinois since 1992. The center was the first clinic to serve adults with the disability. He cautions that there is nuance about how and when you talk about death. “Our patients are so concrete. They can become so focused on the fact that they’re dying, they have trouble living,” he explains.

Many have a different understanding of time, he adds. For example, the parents of a patient bought cemetery plots for themselves and their son. “This was a very bright guy, but for the next five years we dealt with his depression,” as the young man focused on his death which was far in the future. “So we have to be careful with these conversations,” says Chicoine.

Barriers in the Medical System

Whether or not you have disabilities, having a good relationship with your primary care physician is important for having your choices honored at the end of life. But finding a doctor can be tough for those with IDD. Physicians often do not want to treat people with disabilities. An article in the October 2022 issue of Health Affairs entitled, “I Am Not the Doctor For You” about three focus groups of physicians across disciplines and regions of the U.S. found considerable reluctance and outright prejudice towards people with disabilities.

“Some participants … revealed negative attitudes … and commonly used outdated or ableist language (for example, ‘mentally retarded’),” according to the study. Some admitted that they had turned away people with disabilities from their practice. One reason is time constraints. Explaining medical issues to someone with an intellectual disability takes more time, yet doctors are reimbursed for a 10-minute appointment even if it takes 30.

Pervasive “ableism” is common including in the medical profession. Many providers assume that a person with IDD has a poor quality of life. Such assumptions can have serious consequences. An article in a recent Journal of the American Board of Family Medicine entitled, “Ableism at the Bedside,” found that people with IDD had a higher risk of mortality from COVID-19 compared to others with similar medical problems.

In one case, ICU physicians repeatedly pushed for a “do not resuscitate” order to be in place for a woman with Down syndrome. Her primary care doctor and family refused. The woman went on to a full recovery.

Medical schools and residency programs offer little training to help providers feel more comfortable treating this population.

Sue begins end-of-life conversations when a patient he’s followed for years develops more serious symptoms.

“When I bring it up, I’m not saying, ‘Okay let’s talk about dying.’ I begin by asking what are they seeing? How is your child compared to ten years ago? How are things at home? For everyone who has serious health conditions, we do need to talk about planning for the future. As conditions change, it’s best to be prepared well ahead of time, rather than making difficult decisions in a crisis. I’ve found that families are quite receptive,” Sue says.

Palliative Care

If a person ends up in the ICU, communication can be very challenging. Palliative care specialists must assess their level of pain, for example, if they cannot converse. Treatment choices can be hard to determine, especially if there is no guardian or caregiver who knows the patient well. Guardians are typically family members, even if they have not been living with the patient. The staff of group homes who may know the patient best are usually not included in hospital decisions.

“No matter who the patient is, we always want to get as much information from a person based on what they do and don’t want, what they do or don’t value,” says 2021 Next Avenue Influencer in Aging, Dr. Jessica Zitter, a specialist in both critical care and palliative medicine at a public hospital in Oakland, California, and author of “Extreme Measures — Finding a Better Path to the End of Life.”

“The first principle is to try to elicit from a person the things that are important to them. Bring that information into their health care plan and medical decisions. Even a person who is very, very ill or who has a psychiatric illness or Down syndrome can say ‘Don’t do this to me.'”

Ultimately with a life-threatening illness, no matter the patient’s disability, “What we really need to be saying is, we’re not going to abandon you. We want to do what you want until the last moment. We’ll hold your hand,” says Zitter.

Supported Decision Making

Supported decision making is a process that helps people with IDD make decisions about important life issues. A team of family members, friends, neighbors, professionals or volunteers manages discussions to help the individual decide things about jobs, marriage or housing.

The process can also be used for end-of-life planning.

Darcy Woodward is exploring how to disband her guardianship and transition to supported decision making. She recognizes that Charlotte can make her own decisions. “I wouldn’t want guardianship to transfer to a stranger who would disregard Charlotte,” she says.

For parents of adults with IDD, such planning is critical, which is why The National Down Syndrome Society plans to publish an end-of-life guide. “It’s really about proactively planning for end-of-life care,” says Rachel Grimm, manager of health programs, aging and caregiving for NDSS.

“We want readers to recognize that having a backup plan and planning for the future are so important for happiness and sustainability. We’re encouraging families to find a lawyer to walk them through,” Grimm says.

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SYNERGY HomeCare provides care that supports people of all ages and abilities. Our caregivers provide companionship and support that keep people moving and thriving. Find a location near you or contact us to learn how we can provide additional disability support for your loved one and you.

You can also view SYNERGY HomeCare’s complimentary Family’s Guide to Understanding and Supporting Adults with Disabilities.

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The post End of Life Care for People with Developmental Disabilities appeared first on SYNERGY HomeCare.

Writer Rosie Wolf Williams

This article originally published on Nextavenue.org

My mother told me many times over the years that she had a will, and I believed her. When she passed away, we discovered that her will was 40 years old — and completely useless.

To start, she had never signed the copy we found, and the man named to be executor had died a decade before she did. Grandchildren born after she wrote the will were not mentioned, and items left to some people had long ago been passed on to others.

Such problems are not uncommon, because many older adults and their children don’t want to talk about death. Of course, you could simply ask your parents or others about their wishes, but how do you make sure the transition after they have died is smooth, without sounding harsh or greedy?

Who Needs a Will?

“The question in so many minds is, what happens if my parent dies without a will? The short answer is, it depends,” says Rebecca Goldfarb, estate planning and elder law attorney, and cofounder of a law firm in Tarzana, California.

“If you die with very few assets and you only have one child, you may not need a will,” she adds. “But what if you have more assets or more children? You have to bite the bullet and have the tough conversations and probably hire a lawyer to help.”

While that may sound unpleasant, she adds, “these conversations can bring you closer to each other in the end.”

David R. York, a certified public accountant and managing partner at a law firm in Salt Lake City, says it is important for everyone to have an estate plan, especially as we age. And it is essential that everyone should have at least a will in place.

What Wills Can Do

He recommends that loved ones be reminded of these points if they are appropriate to their individual situations:

• If the loved one is a part of a blended family, it’s critical to do planning to avoid either a full or partial disinheritance of a surviving spouse or their children.

• It’s important to prepare a will and appoint guardians if there are minor children or adult children with special needs.

• Wills are especially important if heirs might squabble or if you want certain assets to go to specific people.

• Single people need a plan for their assets, especially if they are in a committed relationship but not married. Some state inheritance laws typically do not provide for a domestic partner.

A will is an important first step to ensure that a relationship is recognized before a loved one dies, so the remaining partner can access their right to property or benefits. If you die without a will or living trust — a situation known as intestate succession — your assets may be distributed according to rules set out in state law, which differ from state to state and may be very different from what you would choose.

Is Their Will Up to Date?

When asked if there is a will created and in place, some older adults will say they are prepared but in truth they are not prepared at all. They may have a will that is old and no longer relevant to their current situation or may have not signed or filed their will and other important papers.

Clarifying the status of older adults’ wills is important to a smoother transition of assets and should be addressed when they are of sound mind and clearly able to make their own decisions about their estates.

“This is always a conversation that needs to be approached with a lot of caution,” says Luciano Grubissich, medical director of a caregiving benefits manager in Boston, and director of a Latino clinic in the Jamaica Plain neighborhood of that city.

While you need to prepare wills, trusts, financial statements and other documents for the transition of assets, you also should prepare yourself for what may be very difficult conversations with your loved one.

“With somebody that is active and healthy, you can approach the subject more freely,” Grubissich says. “Ask if they have a will, want to have one or what are their wishes once they are deceased. You can also state that these steps are essential to secure his or her legacy and protect their assets from estate taxes and lengthy processes after [their death].”

Confronting Mortality

Before approaching the subject of the will, you need to consider that the loved one may be guarded and resistant to talk about it.

“Nobody likes to contemplate their own mortality or talk about what will happen when they die, especially if they are sick,” says Grubissich. “Once you understand that you can approach the subject by acknowledging that it will be a tough conversation and that they are in charge of when to continue or stop, it may help the conversation go more smoothly.

“It may take several conversations,” he adds, “but once the conversation is established you can offer to be the point person to make all the changes needed to assure a smooth transition.”

Respectfully Discussing a Will

Grubissich offers some tips to approach the topic with your loved one:

• Discuss these issues with your parents with the utmost respect for who they are and have been in your life.

• Empathize with your parents. They are entering a difficult phase in their lives and are no doubt aware of it, perhaps even frightened. Show sensitivity to what they are going through.

• Be very careful to help them maintain their dignity, which they are holding on to very dearly. Don’t push them where they are not yet ready to go. If a topic seems too difficult for them, leave it for another day.

• Offer ideas and options, not ultimatums. Ask for their thoughts on the subjects at hand. They are much more likely to work with you on these issues if they feel that they are an equal partner in the decision-making.

• Start these discussions early. You do not want to be in the middle of a crisis when you have to address these issues. That will not go well.

• If, despite your best efforts, the conversation with your parents becomes fraught, consider bringing a professional into the discussions, someone who is used to dealing with such issues.

• Finally, don’t be discouraged or give up. This is a period of great transition for your parents and for you, and it will take time and effort to get it right.

Get Legal Help

It is wise to have a lawyer involved in any legal processes. Offer to arrange or personally provide your parents’ transportation to and from the lawyer’s office. Matters like this can be the most difficult part of the process for older adults with limited mobility. Approach matters calmly, be open-minded and offer solutions to issues that arise.

“I encourage you to find a lawyer you like — yes, friendly, supportive and smart lawyers exist — who will teach you what you need for your specific family,” says Goldfarb. “Find someone who focuses his or her practice on estate planning and not five other areas of law.”

“Make sure they value a lifelong relationship and don’t see this as a one-time transaction with fill-in-the-blank forms,” she adds. “These documents should be modified as circumstances and the laws change. The lawyer should also be detailed, plan comprehensively and administer a lot of estate plans so they can share their 20/20 hindsight with you in their planning. You deserve the best.”

My family’s journey through the process continues. We were able to solve a few problems along the way, and we continue to make progress with others.

We have all decided to spare our own children from having to deal with the same issue when we eventually die. Creating a will of our own, along with ensuring other legal directives are in place, can ease their minds and allow them to move on quickly, and with good memories.

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SYNERGY HomeCare provides care that supports people of all ages and abilities. Our caregivers provide companionship and support that keep people moving and thriving.

Find a location near you or contact us to learn how we can provide additional support to you and your loved ones.

 [877-432-2692]

The post Mom, Do You Have a Will? appeared first on SYNERGY HomeCare.