The Uncomfortable Truth About Patient-Centered Design in Health Tech that I Learned at CES 2026

The Uncomfortable Truth About Patient-Centered Design in Health Tech that I Learned at CES 2026

AI Caregiving Health Tech Med Tech UX

I went to the CES 2026’s Digital Health Summit in my new city of Las Vegas, and yes, I oohed and ahhed at the dancing robots and awesome cars and vehicles on display.

But this isn’t your usual “look at this shiny new device” content you’ll see everywhere else about CES. I’m going to share the hard truths that came directly from patients, caregivers, and the organizations who represent them.

If you’re building healthtech, this is what your users are actually saying about what works, what doesn’t, and what they desperately need you to stop doing. Let’s go!

Contents


Left to right: Jennifer Goldsack, Randall Rutta, Alice Pomponio, Jake Heller, and Yuge Xiao

Product Design Failures Nobody Talks About

Your product design isn’t neutral

Randy Rutta from The National Health Council shared a couple of stories that should make every product team pause:

  1. A major pharma company launched inhalable insulin with all the confidence in the world. The technology was solid, and the marketing was ready, but it flopped completely because they never asked patients if they’d actually use it.

    It turns out that people managing diabetes need precision. Something sprayed into your lungs doesn’t feel precise, even if the science says it is. Plus, patients hated the inhaler design itself. Simple focus groups made of their target user base would have caught both issues before millions were spent on development and launch.
  1. Another story hit even harder for me as a Black woman. Randy said a Black woman refused to wear a health monitoring device because it was a bulky black device on her waistband that made her afraid of being stopped by police. Her solution was painfully simple: “If it came in pink, it would have changed everything for me.”

This isn’t about inclusion for inclusion’s sake. It’s about building products that don’t put users at risk. Product design is literally life-or-death for some users.

Randy also mentioned patients with eczema and psoriasis who can’t wear certain devices because they’re too sensitive to materials touching their skin. That’s a deal-breaker for entire patient populations—a product design consideration that could eliminate your addressable market if you ignore it.

Engage patients early or pay later

Alice Pomponio from American Cancer Society’s venture capital arm sees this pattern constantly. You have to think beyond product features to systemic change. She asks founders: “What is not only the short-term product development strategy, but also the longer-term healthcare systemic step change you’re planning to deliver?”

Get patient voices around your cap table. Diversify your board perspective. Even if you have a great management team with good intentions, without a board that supports patient-centered decisions, you’ll lose the opportunity to make cost-effective strategic choices upfront.

It’s cheaper to fix problems during design than during M&A negotiations when your product strategy determines your acquisition price.

Women’s Health Tech Is Broken

Left to right: Sheena Franklin and Maya Friedman

Women are done waiting for tech that works for THEM

Sheena Franklin of K’ept Health interviewed Maya Friedman from Tidepool about how healthtech uses males as the default for AI.

Maya dropped a statistic that should embarrass the entire diabetes tech industry: 70% of women with type 1 diabetes experience insulin sensitivity changes around their menstrual cycles, but there are NO clinical guidelines or algorithms designed for this. Nothing. So women have to manually adjust their diabetes management systems every single month because the technology assumes their bodies work like men’s bodies.

“We need to stop thinking about women’s health as reproductive health. 𝘌𝘷𝘦𝘳𝘺 𝘴𝘪𝘯𝘨𝘭𝘦 𝘩𝘦𝘢𝘭𝘵𝘩𝘤𝘢𝘳𝘦 𝘤𝘰𝘮𝘱𝘢𝘯𝘺 𝘯𝘦𝘦𝘥𝘴 𝘪𝘯𝘧𝘳𝘢𝘴𝘵𝘳𝘶𝘤𝘵𝘶𝘳𝘦 𝘧𝘰𝘳 𝘥𝘢𝘵𝘢 𝘤𝘰𝘭𝘭𝘦𝘤𝘵𝘪𝘰𝘯 𝘢𝘵 𝘵𝘩𝘦 𝘪𝘯𝘵𝘦𝘳𝘴𝘦𝘤𝘵𝘪𝘰𝘯 𝘰𝘧 𝘸𝘰𝘮𝘦𝘯’𝘴 𝘩𝘦𝘢𝘭𝘵𝘩.”

The data gap is massive

Maya Friedman

Maya referenced a project called “The Library of Missing Data Sets,” an art exhibition of hundreds of empty filing cabinets labeled with data sets that don’t exist across different industries. When you look at what’s missing, you see where biases already exist in healthcare.

As AI becomes more prevalent, these data gaps will replicate the same biases we’re trying to fix. That’s why every healthcare technology company needs infrastructure for data collection at the intersection of women’s health. Not as a “nice to have.” As a business requirement.

Tidepool partnered with Oura to build the largest longitudinal data set of diabetes device data combined with biometric data. They’re distributing Oura rings to thousands of users already on the Tidepool platform. The data will include:

  • Activity tracking
  • Sleep patterns
  • Menstrual cycle data
  • Diabetes device data from the same individuals
  • Health surveys for contextual data

This is what infrastructure looks like when you take women’s health seriously.

Algorithms need to be smarter

Maya’s immediate priority: building algorithms that aren’t “cycle agnostic.” She wants systems that account for 30-day hormonal patterns, not just 72-hour learning horizons.

Women are not just tiny men. We have different needs. We need to display different data. We need algorithms that are potentially different for women versus men.” – Maya Friedman, Tidepool

And yes, that means maintaining multiple versions of products.

Yes, it’s more expensive. But it’s also addressing the actual market need instead of pretending half the population doesn’t exist.

It’s not just about menstrual cycles

Maya’s longer-term vision includes AI models that are dynamic across different reproductive milestones. What does an algorithm look like for someone in perimenopause who isn’t having regular periods? What are the learning horizons for that system?

The real moonshot? A fully closed-loop system that accounts for polycystic ovarian syndrome (PCOS), type 1 diabetes, and menstrual cycles without requiring patient interaction at all.

Women need tech that doesn’t make them choose between their health needs and their time.

Accessibility Creates Market Opportunities, Not Limitations

Left to right: Steve Ewell and Peter Kaldes

Peter Kaldes, CEO of Next50 Foundation, delivered a message that should change how every product designer thinks about their addressable market: “Guess what? You still have a point of view over 50. You still have buying power at 60. You can still use your iPhone at 70, and you need really great technology in the 80s and your 90s.”

Most product designers are under 35. Most assume older adults are technology Luddites. The data proves this assumption is completely wrong.

The buying power is enormous

The over-50 population has more buying power than younger generations. Yet, healthtech companies consistently ignore this market or, worse, design products that stigmatize older users. Peter’s frustration was that was crystal-clear:

“I’ve had conversations with some companies like, where are we going to find [older users to test with]? Well, why don’t you try, first of all, start with your company, and second of all, why don’t you start partnering with community organizations that have access to all these people. This is not hard. It’s just getting people out of their comfort zone.” – Peter Kaldes

Dual generational use is smart design

Peter loves technologies that serve multiple generations. If it’s good for older adults, it’s good for everyone. Examples he highlighted:

  • Hearing technology embedded in glasses to reduce stigma around hearing aids
  • AI tools that coordinate healthcare appointments along with transportation and nearby housing options
  • Financial fraud protection that helps older adults without treating them like children
Left to right: Meg Barron, Dominic King and Myechia Minter-Jordan

AARP CEO Myechia Minter-Jordan shared specific examples of products in AARP’s booth that reduce stigma:

  • Sneakers designed to prevent falls that look like regular athletic shoes (they appear to have laces, though velcro is involved)
  • Glasses with closed captions for people with hearing impairments
  • Glasses with hearing aids built into the stems (partnered with Sadika)

“We want to ensure tools don’t further stigmatize us but allow us to live with dignity and age well.” – Myechia Minter-Jordan

The accessibility-to-mainstream pipeline

Left to right: Natalie Zundel, Griffen Stapp, Ryan Easterly and Jack Walters

Griffen Stapp from Ability Central pointed out something product teams consistently miss: Products designed FOR the disability community often get adopted by everyone. But products made for the general population rarely get adapted later.

Examples are everywhere. Curb cuts help wheelchair users, but they also help parents with strollers, delivery workers with hand trucks, and travelers with rolling luggage. Closed captioning helps deaf users, but also people watching videos in noisy environments or practicing language skills.

Build accessibility in from day one, or you’re leaving both impact and revenue on the table.

Adaptable frameworks beat one-size-fits-all

Jack Walters, co-founder of HapWare (winner of the CTA Foundation Innovation Challenge), explained their approach: “Not everyone’s going to have similar care or similar treatments, so you need to be able to adapt to all those different types of needs and necessities in the community.”

They involve the disability community in design from the start, knowing common pain points and anticipating when certain issues might come up. That’s how you build solutions that actually solve problems instead of creating new friction.

Continuous Monitoring Changes Patient Behavior (Without Doctor Visits)

Left to right: Ami Bhatt, Tom Hale, Lucienne Ide and Jack Leach

Tom Hale, CEO of Oura, explained why continuous data matters more than episodic measurements: “Normal isn’t 98.6 degrees. Normal is what’s normal for you, and being able to see that deviation from the baseline allows us to make predictions.”

Oura’s “symptom radar” looks at temperature, heart rate, and other biometrics to predict when you might be getting sick—days before symptoms appear. That’s the intervention window where you can actually change behavior and potentially avoid getting sick entirely.

Patients change behavior when they see their own data

Jake Leach from Dexcom shared a pivotal study from the early days of continuous glucose monitoring. For years, the standard of care for diabetes was finger pricks, which are episodic, painful, and limited.

They ran a study where they put sensors on patients continuously measuring glucose, but they didn’t show patients the data for a week. They just collected baseline information. Then they turned on the display.

Within a day, people started making behavior changes based solely on their own knowledge of their disease and this information they’d never had before. No doctor intervention. No coaching. Just visibility into their own patterns.

The infrastructure problem doctors face

Source: Somebody Digital

Doctors are drowning in data with no infrastructure to process it.

Lucienne Ide from Rimidi left clinical medicine because she was disappointed by how electronic health records (EHRs) were implemented. She expected digital records with clinical decision support layered on top. Instead, she got data dumps with no insights.

As she put it: “I don’t know a single doctor who’s saying, ‘If only I had more data, I would be a better clinician.'”

What doctors need is not more data, but clinical decision support that turns data into actionable insights.

Tom from Oura said one doctor told him: “I want the Oura ring to give me information as if it was written by another doctor. Basically, a consult. Here’s what I know about this patient in clinical terms, and this is the information you need. Everything else, don’t give it to me.”

That’s the responsibility of device companies: Don’t just collect data. Provide insights that save clinicians time and help them make better decisions faster.

Prevention requires behavior change at scale

The consensus was clear: behavior change is what moves the needle on long-term health outcomes. Not medications or procedures. Sleep well, eat well, manage stress, and stay balanced.

Healthcare has failed at behavior change for 75 years because it requires data, user experience (UX), engagement, education, and reinforcement. Doctors don’t have time for that level of ongoing support. Educational content alone doesn’t work because people don’t retain or apply it without reinforcement.

But continuous monitoring combined with AI and smartphone engagement is the combination that finally makes prevention scalable.

As Ami Bhatt from the American College of Cardiology noted, “What has my attention besides my kids? My phone. And I’m looking at that, and that’s the power.”

AI That Actually Helps, Not Hypes

Source: Oxio Health

Dominic King from Microsoft AI cut through all the conference noise:

“The biggest challenge in healthcare today is the mismatch between global demand and constrained supply.” – Dominic King

AI isn’t replacing doctors. It’s closing the gap between what people need and what the healthcare system can deliver.

The future is proactive health companions

Chatbot woman and robot conversation

5 years ago, AI was good at classification and spotting single problems. Now we have thinking and reasoning models that can pass the same exams physicians take, often at higher rates than human test-takers.

Dominic’s vision for 5 years from now is A health companion that you wake up and it’s sitting in the background, doing the hard work for you and being more proactive. At the moment, everything is still very reactive.”

This means:

  • Identifying sleep issues before they compound
  • Flagging medication adherence problems
  • Coordinating complex care across multiple providers
  • Helping people navigate fragmented healthcare systems
  • Providing specialized opinions even in rural areas

The caregiver opportunity is massive

Myechia shared that one in four Americans are caregivers right now (63 million Americans). If you’re not currently a caregiver or need care yourself, one day you will be.

AI tools can help caregivers:

  • Communicate with provider teams more effectively
  • Ensure loved ones are safe at home
  • Coordinate the “universe of appointments” that comes with aging
  • Reduce information asymmetry (where only people with medical training understand how systems work)

The key is addressing privacy and data concerns upfront, not as barriers to innovation but as facilitators of trust.

The co-design imperative

Dominic emphasized that co-design is critically important. Building WITH users instead of just FOR them avoids the problems we see when products hit the real world.

At Microsoft, they’re seeing 50 to 60 million health questions a day through Copilot. That’s enormous insight into what people actually need help with.

But as he noted, “A lot of founders are young. They don’t have a good idea of what it’s like to be elderly or sick.”

That’s why bringing your end users (patients, clinicians, caregivers) into the development process isn’t optional. It’s the difference between building something that works versus something that sits unused.

The Digital Equity Gap Nobody’s Solving

Left to right: Steve Ewell and Peter Kaldes

Steve Ewell, Executive Director of CTA Foundation, laid out what he calls “the three legs of the stool” for digital equity:

“You need the hardware, you need the broadband access, and then you need the support and education to go along with it. And so often that last one is left off.” – Steve Ewell

That last leg of support and education is where healthcare technology adoption actually lives or dies.

Tech alone isn’t enough

Peter Kaldes from Next50 Foundation added context that should worry anyone in healthtech: nonprofits doing the heavy lifting of digital equity training are facing unprecedented cuts to federal grants.

As Peter noted: “I love going to an Apple Store and seeing these free classes, but you have to find an Apple Store which are not in the neighborhoods that need the help the most.”

The communities that need technology training the most are the least likely to have access to it. And the organizations that bridge that gap are losing funding.

The clinical trial proof

Source: Anatomy.app

Dexcom is running large clinical trials where half the participants come from underserved communities specifically to prove the technology works equally well regardless of service level. They want hard data showing these tools aren’t just for people with resources.

Rimidi partnered with community health centers during COVID to monitor high-risk pregnancies remotely using blood pressure monitors and texting protocols. They tracked engagement by ethnicity and primary language.

There was no difference in engagement. Everyone has a smartphone in that demographic (women of childbearing age), and everyone can text.

This proves that engagement isn’t the problem. The problem is getting access to the infrastructure and training on how to use it.

Mission-aligned capital as the solution

Source: Next50 Foundation

Next50 Foundation is one of the first private foundations to invest 100% of their endowment in aging-focused companies and infrastructure. Not just grant-making, but the other 95% of their capital.

They created an aging investment framework with JP Morgan that looks at four themes:

  1. Health
  2. Social connectivity (including technology)
  3. Economic opportunity (workforce and financial vehicles for longer lives)
  4. Built environment (mobility, housing, accessibility)

As of December, about 75% of their endowment was invested in this framework, and Peter offered a challenge to the investment community:

What if capital actually had values? Climate investors have successfully made money and helped power cleaner energy. The same can be true for aging. How can we possibly ignore that the globe is aging?” – Peter Kaldes

They also launched a new nonprofit called Leverage focused on advancing policies in Colorado to make aging more affordable—housing, living wages, caregiving resources.

Because you can’t solve systemic problems with technology alone. You need policy change too.

Patient Voices Need to Drive Startup Decisions

Jake Heller from Citizen Health is building AI tools that help patients with rare diseases query their own medical records and advocate for themselves at doctor’s appointments.

His philosophy: “Putting patients in the driver’s seat is one of the biggest opportunities we have right now.”

The journaling and documentation problem

Doctor and patient POCs

Sometimes when people with rare or complex diseases go to appointments and talk about their concerns, doctors don’t believe them. These patients need help translating their own experience in a way that clinicians will take seriously.

Citizen Health helps patients journal their symptoms and experiences, then presents that data in clinical terms. “Here’s a video of my daughter having this specific type of seizure. Here are the journal entries. Here’s how this has changed over time.”

That’s advocacy powered by data and AI.

The time-to-diagnosis crisis

Randy pointed out that if you have an autoimmune disease, it could be 3, 5, or even 7 years before diagnosis. For healthcare innovation, it can take 7 years just to move something through an FDA process.

Those time frames compound into suffering that’s completely preventable if we had better systems and patient input earlier in development cycles.

Patient organizations are ready to help. They’re trusted by their communities. They can broker relationships, speed recruitment, help startups get from lab to market faster with products that patients will actually use and that payers will actually reimburse.

The startup trap to avoid

Source: National Institute for Health and Care Research (NIHR)

Alice warned about companies that design products, then go looking for users to validate decisions they already made.

That’s backwards. Instead you should:

  • Find patient voices early.
  • Put them on advisory boards.
  • Include them in design sprints.
  • Listen to their feedback even when it’s uncomfortable or expensive to implement.

The successful companies in her portfolio think about long-term systemic change, not just short-term product development metrics.

What Healthtech Companies Need to Do Differently

The patient community isn’t a barrier to innovation. They’re the key to building products that actually work.

Stop designing in the dark

Source: Patient Better

If you’re building healthtech without continuous patient input, you’re wasting resources. You’ll miss market opportunities. You’ll build products that don’t get used or that put certain populations at risk.

Randy’s message was clear: “Come to us, and we will broker that relationship, because in the end, you’ll be more successful, and the patient community will get a better result.”

Measure what matters

Myechia challenged the AI industry on how they measure success: Don’t count the number of tools or features. Measure whether you’re closing the gap between lifespan and health span.

That gap is currently 13 years, which is the difference between how long people live and how many of those years are healthy years. If your technology doesn’t move that number, what’s the point?

Think systemically, not just tactically

Source: IQ Eye

Every speaker emphasized that technology is only one piece of a larger puzzle. You also need:

  • Policy changes that support adoption
  • Payment models that reward prevention
  • Training infrastructure for underserved communities
  • Clinical decision support that turns data into insights
  • Algorithms that account for biological differences across populations

If you’re only focused on your device or platform, you’re missing the bigger picture of how healthcare actually works.

The sales enablement angle

All of these insights about patient needs, accessibility requirements, women’s health gaps, digital equity challenges are the stories your prospects need to hear during long sales cycles.

B2B healthtech sales aren’t quick. You’re selling to health systems, payers, and large provider networks. The buying committees are complex. The evaluation periods stretch for months.

That’s exactly when prospects go cold or arrive at sales calls unprepared.

Daree headshot R side arms folded

I create educational email courses to bridge that gap. They keep prospects engaged with the exact kind of patient-centered insights I heard at CES. They position your company as one that understands real-world healthcare challenges, not just technology features.

In 2026 and beyond, healthtech companies that want to win understand their users deeply enough to build products those users will actually want, trust, and use.

The Measurement Challenge

A woman helping her elderly mother in a wheelchair

How do you know if you’re succeeding at patient-centered design? Myechia offered a simple test: “What do you want your life to look like at 75?”

You probably want to:

  • Stay in your home
  • Feel healthy
  • Stay empowered
  • Have information flow easily between you and loved ones
  • Remain connected to family and physicians
  • Be safe at home
  • Engage in daily activities with ease and without pain
  • Understand your medical information and chronic diseases
  • Control who has access to your data
  • Have a care plan you can execute yourself
  • Receive information you trust and can use readily

If your tech helps people achieve any of those goals, you’re on the right track. If it doesn’t, you need to rethink your approach.

Final Thoughts

CES 2026’s Digital Health Summit covered the hard work of actually listening to patients, caregivers, and the communities being served.

Startups who want to be successful in healthtech aren’t the ones chasing the next funding round or the flashiest AI feature. They’re the ones asking better questions:

  • Have we talked to patients who look different from our team?
  • Does our product work for women’s bodies, not just male bodies?
  • Can older adults use this without feeling stigmatized?
  • What infrastructure needs to exist beyond our technology?
  • Are we solving a real problem or just building something technically impressive?

Those questions lead to products that get adopted, outcomes that improve, and companies that actually make a difference. That’s the kind of healthtech worth building.


Caregiver Guilt: Finding Compassion and Peace of Mind

Caregiver Guilt: Finding Compassion and Peace of Mind

Caregiving

Imagine Sarah, who works full-time while caring for her aging mother. Every moment not spent caregiving feels like a personal failure. Every compromise, every exhausted sigh, triggers a wave of guilt that threatens to overwhelm her sense of self-worth. Her story is not unique – it’s a shared experience for countless caregivers struggling to balance compassion with personal limitations, resulting in caregiver guilt.

Caregiver guilt is a silent burden that weighs heavily on millions who support family members through illness, aging, and/or disability. Many caregivers experience significant emotional distress, with guilt emerging as a particularly challenging emotion. These emotions are common, but they don’t have to define your caregiving journey.

Contents

The Origins and Impact of Caregiver Guilt

What is caregiver guilt?

Caregiver guilt is an emotional response that many caregivers experience when they feel they’re not doing enough for their loved ones or when they prioritize their own needs. It’s a complex emotion that can stem from various sources and manifest in different ways. According to a 2023 survey by AARP, 50% of caregivers reported that caregiving increased their level of emotional stress.

Caregiver guilt can be both productive and destructive. Productive guilt can motivate you to provide better care, while destructive guilt can lead to burnout and negatively impact your mental health.

Common triggers for caregiver guilt include:

  • Taking time for yourself
  • Feeling frustrated or angry with your care recipient
  • Considering professional care options
  • Not being able to do everything perfectly

Psychological roots of caregiver emotions

The emotions caregivers experience, including guilt, are deeply rooted in personal and family dynamics. Your upbringing, cultural background and individual values all shape your emotional responses to caregiving.

For instance, in some cultures, there’s a strong expectation that adult children will care for their aging parents. This societal pressure can intensify feelings of guilt when caregivers struggle to meet these expectations.

The emotional toll of guilt

Nurse in hallway looking worried

Caregiver guilt can have significant mental health implications. Chronic guilt can lead to:

  • Depression and anxiety
  • Increased stress levels
  • Lowered self-esteem
  • Difficulty in decision-making

The physical manifestations of this emotional burden can include:

  • Sleep disturbances
  • Weakened immune system
  • Chronic fatigue
  • Headaches and muscle tension

How to Manage Caregiver Guilt

Managing guilt isn’t just about quick fixes—it’s about creating a lasting, healthy approach to caregiving.

Change your perspective

Caregiving is a choice. Reframe your thinking to see it as a privilege, not a burden to endure.

Self-compassion and emotional healing

Woman and granddaughter looking at pictures on phone

Practicing self-compassion is crucial in managing caregiver guilt. Here are some strategies to cultivate self-compassion:

  • Develop mindfulness techniques: Mindfulness can help you become more aware of your thoughts and emotions without judgment. Try setting aside 5-10 minutes each day for mindfulness meditation.
  • Learn positive self-talk strategies: Replace self-critical thoughts with more supportive ones. For example, instead of “I’m not doing enough,” try “I’m doing the best I can with the resources I have.”
  • Create personalized emotional support systems: Identify people you can turn to when you’re feeling overwhelmed. This could be friends, family members, or a support group for caregivers.
  • Practice forgiveness and self-understanding: Recognize that making mistakes is part of being human. Treat yourself with the same kindness you would offer a friend in a similar situation.

Set realistic boundaries

Woman and daughter looking in mirror

Setting boundaries is essential to take care of your well-being and to continue providing care without burnout. Here’s how you can establish healthy caregiving limits:

  1. Identify your limits: Be honest about what you can and cannot do.
  2. Communicate clearly: Express your boundaries to family members and your care recipient.
  3. Learn to say no: It’s okay to decline additional responsibilities when you’re already at capacity.
  4. Prioritize self-care: Schedule time for activities that recharge you.

Remember, setting boundaries isn’t selfish; it’s necessary for providing quality care in the long term.

Change guilt into positive action

Instead of letting guilt weigh you down, channel it into positive actions:

  • Develop gratitude practices: Start a gratitude journal where you write down three things you’re thankful for each day. This can help shift your focus from what you’re not doing to your blessings, progress and accomplishments.
  • Recognize personal achievements: Celebrate small victories in your caregiving journey. Did you manage to get your loved one to eat a full meal? That’s worth acknowledging.
  • Build resilience and emotional intelligence: Learn to identify and manage your emotions effectively. This can help you respond to challenging situations with more clarity and less guilt.

Research at Baylor University found that caregivers who practiced gratitude tend to have more emotional strength. They’re better at understanding others’ feelings and can handle the tough parts of caregiving more easily. Being grateful helps them cope with the challenges that come with taking care of someone.

Create a balanced life

3 women running together
Source: Styled Stock Society

Maintaining balance is key to sustainable caregiving. Here are some tips to help you create a more balanced life:

  • Design personal care routines: Establish a daily routine that includes time for self-care activities like exercise, reading, or hobbies.
  • Develop time management skills: Use tools like calendars or apps to organize your caregiving tasks and personal activities.
  • Integrate self-care into daily responsibilities: Find ways to incorporate self-care into your caregiving duties. For example, listen to an audiobook while preparing meals.
  • Maintain personal relationships and interests: Don’t let caregiving isolate you. Stay connected with friends and continue pursuing your interests.

Professional support and resources

Woman making a point in a group meeting

Don’t hesitate to seek professional help when dealing with caregiver guilt. Here are some options to consider:

Caregiver guilt is not a reflection of failure, but a testament to your deep compassion. When you practice healthy coping techniques and put your well-being first, you can navigate these challenges with grace and strength.

Your well-being matters just as much as the person you’re caring for. By taking care of yourself, you’re ensuring that you can provide the best possible care for your loved one. So, take a deep breath, give yourself some credit, and know that you’re doing (and have done) important and valuable work.

Reach out to a support group, speak with a counselor, or simply acknowledge your incredible contribution to your loved one’s life.

References

Addressing Caregiver Guilt. (2025). Ultimate Care. Retrieved from https://www.ultimatecareny.com/resources/addressing-caregiver-guilt

Building Caregiver Resilience. (n.d.). James L. West Center for Dementia Care. Retrieved from https://www.jameslwest.org/blog/building-caregiver-resilience/

Cefaratti-Bertin, S. (2024). Study Finds Gratitude Matters for Caregivers of People with Alzheimer’s. Baylor University. Retrieved from https://news.web.baylor.edu/news/story/2024/study-finds-gratitude-matters-caregivers-people-alzheimers

Gratitude Exercises for Seniors and Caregivers: Building Positive Connections and Resilience. (2024). Peak Medical Home Care. Retrieved from https://peakmedicalhomecare.com/2024/10/24/gratitude-exercises-for-seniors-and-caregivers-building-positive-connections-and-resilience/

Horovitz, B. (2023). More Than 60% Say Caregiving Increased Their Level of Stress and Worry, New AARP Report Finds. AARP. Retrieved from https://www.aarp.org/caregiving/health/info-2023/report-caregiver-mental-health.html

Kang, M. (2024). 4 Strategies to Manage Caregiver Guilt. Psychology Today. Retrieved from https://www.psychologytoday.com/us/blog/rebuild-your-life/202411/4-strategies-to-manage-caregiver-guilt

Maintaining Boundaries as a Caregiver: Go From Guilt to Glow. (n.d.). Mental Health America (MHA). Retrieved from https://mhanational.org/resources/maintaining-boundaries-as-a-caregiver-go-from-guilt-to-glow/

Schempp, D. (n.d.). The Emotional Side of Caregiving. Family Caregiver Alliance. Retrieved from https://www.caregiver.org/resource/emotional-side-caregiving/

Supporting caregivers with resilience and sense-of-purpose. (2024). Retrieved from https://www.uhc.com/news-articles/healthy-living/caregiving-resilience

Managing Sundown Syndrome: Effective Strategies for Caregivers

Managing Sundown Syndrome: Effective Strategies for Caregivers

Caregiving

Sundown syndrome, or “sundowning,” affects many elderly individuals, particularly those with dementia or Alzheimer’s disease. This challenging condition causes behavioral changes as daylight fades into evening. Up to 20% of people with Alzheimer’s experience sundowning symptoms. For family caregivers, managing sundown syndrome every day can be exhausting. Let’s look at some practical, evidence-based approaches to recognize, minimize and manage the effects of sundown syndrome.

Contents

What is Sundown Syndrome?

Sundown syndrome, also known as sundowning, is a set of neuropsychiatric symptoms such as confusion, anxiety, agitation, pacing, and wandering that intensify as daylight fades. These behaviors can persist well into the night, disrupting sleep patterns and causing distress.

The exact causes of sundowning are not fully understood, but several factors play a role:

  • Disruptions in circadian rhythm
  • Fatigue and exhaustion from daily activities
  • Changes in lighting and increased shadows
  • Hormonal imbalances such as decreased melatonin production

Sundowning primarily affects individuals with dementia, particularly those with Alzheimer’s disease. However, it can also occur in elderly people without dementia, especially those in care facilities or hospitals.

The biological causes of sundowning behaviors are complex. Research shows these causes may be damage to the brain’s cholinergic system and hormonal disruptions (such as problems with the hypothalamic-pituitary-adrenal (HPA) axis) that helps control stress and bodily functions. Additionally, reduced melatonin production in aging people can further disrupt normal sleep-wake cycles.

Recognize the early warning signs

Identifying the early signs of a sundowning episode can help you as a caregiver to intervene quickly and potentially prevent or minimize symptoms. Some behaviors to watch for are:

  • Increased restlessness or agitation as the day progresses
  • Mood changes, such as becoming more anxious or suspicious
  • Difficulty concentrating on tasks
  • Pacing or wandering more frequently
  • Shadowing caregivers or becoming more clingy

It’s essential to distinguish sundowning from other health issues. Unlike conditions such as delirium, sundowning symptoms typically follow a predictable pattern, worsening in the late afternoon or evening and often improving by morning.

Tracking patterns and triggers can be invaluable for managing sundowning. Keep a simple log noting:

  • Time of day symptoms appear
  • Duration of episodes
  • Potential triggers (noise, visitors, certain activities, and foods)
  • Effectiveness of interventions

This information can help identify patterns and develop targeted strategies to minimize symptoms.

Practical Management Strategies

When sundowning symptoms occur, having a toolkit to reduce symptoms can help you respond effectively and with compassion. Here are some practical approaches.

Nurse and older woman looking at a magazine

Distraction and redirection techniques

To help redirect and calm your loved one:

Calming communication approaches

Your tone of voice influences how people with Alzheimer’s respond and react, so be sure to:

  • Speak in a soft, reassuring tone
  • Use simple, clear language
  • Avoid arguing or correcting; instead, validate feelings and redirect

Gentle exercise options

Walking has been shown to reduce the symptoms of sundowning and improve sleep quality. Some ways to engage in gentle exercise with a person exhibiting sundowning include:

  • Take a short walk together (if safe and appropriate)
  • Practice seated exercises or stretches
  • Engage in simple dance movements to calming music

Crisis management for severe episodes

  • Ensure the environment is safe and remove potential hazards
  • Use calming techniques like deep breathing or gentle touch
  • If necessary, contact healthcare providers for additional support

Remember, the effectiveness of these strategies may vary. Be patient and willing to try different approaches to find what works best for your loved one.

Create a soothing environment

Environmental factors play a significant role in relieving sundowning behaviors or making them worse. Making thoughtful adjustments to the living space can create a calming atmosphere that may reduce symptoms.

Optimal lighting arrangements

  • Increase indoor lighting in the late afternoon to minimize shadows
  • Use nightlights to reduce confusion during nighttime wakings
  • Consider light therapy boxes to help regulate circadian rhythms

Noise management

  • Reduce background noise from TVs or radios in the evening
  • Use white noise machines or soft music to create a soothing ambiance
  • Encourage quiet activities as bedtime approaches

Temperature and comfort

Nurse with elderly man making crafts

Sundown syndrome is linked to changes in body temperature and activity patterns. People with this condition often have:

  • Less daytime activity
  • More nighttime activity
  • Later peak activity times
  • Higher average body temperature
  • Later peak temperature times

These changes can make their daily rhythms more irregular. To mitigate this, you should:

  • Maintain a comfortable room temperature, typically between 68°F to 72°F (or 20°C to 22°C)
  • Ensure bedding and clothing are appropriate for your loved one’s environment
  • Address any physical discomfort that might contribute to agitation

Familiar and consistent setting

  • Keep frequently used items in consistent locations
  • Display familiar objects and photos to create a sense of security
  • Minimize changes to the environment when possible

Organize the physical space

  • Remove clutter to reduce confusion and potential hazards
  • Use clear labels or signs to help with navigation
  • Consider safety measures like door alarms or motion sensors for wandering prevention

Use these environmental strategies to create a more supportive and calming atmosphere for people experiencing sundowning.

Establish effective daily routines

Aide helping woman put on pink sweater

Consistent daily schedules can significantly reduce sundowning symptoms by providing structure and predictability.

Set a consistent schedule

As a caregiver, you should aim to:

Plan meaningful activities

  • Engage in stimulating activities in the morning and early afternoon
  • Involve the person with Alzheimers in simple household tasks they enjoy
  • Encourage reminiscing with photo albums or familiar objects
  • Gradually transition to calmer activities as the day progresses
  • Avoid overstimulating events or outings in the late afternoon or evening
  • Engage in gentle, repetitive activities in the evening like folding laundry or sorting items

Meal timing and dietary considerations

Sleep hygiene practices

Woman reading in a bathtub with flower petals
Source: Styled Stock Society

Here’s a sample daily schedule to minimize sundowning triggers:

  • 7:00 AM: Wake up, morning hygiene routine
  • 8:00 AM: Breakfast and medications
  • 9:00 AM – 12:00 PM: Engaging activities (puzzles, crafts, gentle exercise)
  • 12:30 PM: Lunch
  • 1:30 PM – 3:30 PM: Quiet time or short nap
  • 3:30 PM – 5:00 PM: Light activities, increase indoor lighting
  • 5:30 PM: Light dinner
  • 6:30 PM – 8:00 PM: Relaxing activities (soft music, gentle massage, or a short walk)
  • 8:30 PM: Begin bedtime routine
  • 9:30 PM: Lights out

Remember to remain flexible. Adjust the schedule as needed based on individual preferences and symptoms.

Medical Interventions and Therapies for Sundowning Symptoms

Interventions without medicine are typically the first line of treatment for sundowning, but medication is necessary in some cases. Always consult with healthcare providers before starting a new medicine.

Medication options

Some of the medicines healthcare providers use to treat the symptoms of sundowning are:

Non-pharmaceutical approaches

Supplements and natural remedies

  • Herbal teas (chamomile, valerian root)
  • Essential oils for aromatherapy
  • Magnesium supplements (under medical supervision)

Discuss any supplements or natural remedies with a healthcare provider to ensure safety and avoid potential interactions with medications.

Addressing underlying health issues

Treating underlying conditions that may contribute to sundowning is crucial. These may include:

  • Pain or discomfort
  • Urinary tract infections
  • Sleep apnea
  • Depression or anxiety

When to consult a healthcare provider

Contact your loved one’s healthcare provider if:

  • Their symptoms significantly impact quality of life or safety
  • Non-pharmacological approaches have been ineffective
  • You have concerns about their underlying health issues

Be sure your loved one gets regular health check-ups, and have open communication with healthcare providers to help identify and address these issues promptly.

Caregiver Support

Caring for someone with sundown syndrome can be physically and emotionally demanding. Recognizing the importance of caregiver well-being is essential for sustainable, quality care.

Caregiver burnout warning signs

  • Feeling constantly exhausted or overwhelmed
  • Neglecting personal health or relationships
  • Experiencing mood swings or irritability
  • Losing interest in previously enjoyed activities

Learn how to prevent burnout before it affects your caregiving.

Respite care options

Explore respite options such as:

  • Adult day care centers
  • In-home respite services
  • Short-term residential care facilities

A study in the The Gerontologistfound that regular use of respite care services can often reduce caregiver stressand improve overall well-being.

Woman hugs a group member

Building a support network

You’re not alone in this journey. Connecting with other caregivers can help you de-stress and learn strategies to maintain your energy and mental health:

  • Join local support groups for caregivers
  • Enlist help from family members and friends
  • Consider hiring part-time professional caregivers

Self-care strategies

  • Practice stress-reduction techniques like meditation or yoga
  • Maintain a healthy diet and exercise routine
  • Set aside time for hobbies and personal interests
  • Seek professional counseling if needed

Resources for caregiver education and support

  • Alzheimer’s Association (www.alz.org)
  • National Institute on Aging (www.nia.nih.gov)
  • Local senior centers and community organizations

Managing sundown syndrome requires patience, consistency, and compassionate understanding. Each person’s experience is unique, so finding the right combination of strategies may take time. With the right approach, people experiencing sundown syndrome and their caregivers can enjoy more peaceful evenings and improved quality of life.

References

7 Tips for Coping with Sundowner’s Syndrome. (n.d.). Banner Health. Retrieved from https://www.bannerhealth.com/healthcareblog/better-me/7-tips-for-coping-with-sundowners-syndrome

Antipsychotics and other drug approaches in dementia care. (2021). Alzheimer’s Society. Retrieved from https://www.alzheimers.org.uk/about-dementia/treatments/dementia-medication/antipsychotic-drugs

Canevelli, M., Valletta, M., Trebbastoni, A., Sarli, G., Tariciotti, L., & Bruno, G. (2016). Sundowning in Dementia: Clinical Relevance, Pathophysiological Determinants, and Therapeutic Approaches. Frontiers in Medicine, 3, 73. doi.org/10.3389/fmed.2016.00073

Cardinali, D. P., Furio, A. M., & Brusco, L. I. (2010). Clinical Aspects of Melatonin Intervention in Alzheimer’s Disease Progression. Current Neuropharmacology, 8(3), 218-227. doi.org/10.2174/1570159107922462096

Food and Eating. (n.d.). Alzheimer’s Association. Retrieved from https://www.alz.org/help-support/caregiving/daily-care/food-eating

Get More Out of Sundowner Distraction Techniques. (2021). Tracy Cram Perkins. Retrieved from https://tracycramperkins.com/get-more-out-of-sundowner-distraction-techniques/

Goyer, A. (2017). 11 Ways to Manage Sundown Syndrome. Retrieved from https://www.aarp.org/caregiving/health/info-2017/ways-to-manage-sundown-syndrome.html

Jacob, D. & Kahan, S. (n.d.). How Do Cholinesterase Inhibitors Work? RxList. Retrieved from https://www.rxlist.com/how_do_cholinesterase_inhibitors_work/drug-class.htm

Kernisan, L. (2025). 5 Types of Medication Used to Treat Sundowning & Difficult Dementia Behaviors. Better Health While Aging. Retrieved from https://betterhealthwhileaging.net/medications-to-treat-difficult-alzheimers-behaviors/

Khachiyants, N., Trinkle, D., Son, S. J., & Kim, K. Y. (2011). Sundown Syndrome in Persons with Dementia: An Update. Psychiatry Investigation, 8(4), 275. doi.org/10.4306/pi.2011.8.4.275

Sample Daily Schedule for Elderly: Create a Routine for Your Loved One. (n.d.). Global One Home Care. Retrieved from https://globalonehomecare.com/sample-daily-schedule-for-elderly/

Shih, Y.H., Pai, M.C., Huang, Y.C., & Wang, J.J. (2017). Sundown Syndrome, Sleep Quality, and Walking Among Community-Dwelling People With Alzheimer Disease. Journal of American Medical Directors Association (JAMDA), 18(5):396-401. doi:10.1016/j.jamda.2016.10.016

Sleep Issues and Sundowning. (n.d.). Alzheimer’s Association. Retrieved from https://www.alz.org/help-support/caregiving/stages-behaviors/sleep-issues-sundowning

Sundown Syndrome: Causes, Treatment, and Advice for Caregivers. (2024). Neural Effects. Retrieved from https://neuraleffects.com/blog/sundown-syndrome-causes-and-treatment-options/

Sundowners Syndrome: Triggers, Symptoms & Management. (n.d.). Keystone Health. Retrieved from https://keystone.health/sundowners-syndrome

Sundowning. (n.d.). Physiopedia. Retrieved from https://www.physio-pedia.com/Sundowning

Thomas, T. & Ritter, A. (2022). Wandering & Sundowning in Dementia. Practical Neurology. Retrieved from https://practicalneurology.com/articles/2022-june/wandering-sundowning-in-dementia

Watson, S., Goodman, B. & Mitchell, K. (2024). How to Effectively Manage Sundowning. WebMD. Retrieved from https://www.webmd.com/alzheimers/manage-sundowning

Ways Caregivers Can Support Seniors in Sundowing Care. (2025). Homewatch Caregivers. Retrieved from https://www.homewatchcaregivers.com/blog/chronic-conditions/4-ways-caregivers-can-support-seniors-in-sundown/

Zarit, S. H., Kim, K., Femia, E. E., Almeida, D. M., & Klein, L. C. (2014). The Effects of Adult Day Services on Family Caregivers’ Daily Stress, Affect, and Health: Outcomes From the Daily Stress and Health (DaSH) Study. The Gerontologist, 54(4), 570-579. doi.org/10.1093/geront/gnt045

Caregiving During Menopause: Balancing Self-Care and Family Responsibilities

Caregiving During Menopause: Balancing Self-Care and Family Responsibilities

Caregiving

As women enter their midlife years, they often find themselves caught in the “sandwich generation,” caring for aging parents or family members while experiencing menopause. Over 60% of women experiencing menopause are also primary caregivers for a family member. The dual burden of caregiving during menopause can feel overwhelming, but with the right strategies, it’s possible to navigate both journeys successfully.

Contents

The Challenges of Going Through Menopause While Caregiving

Menopause is a natural biological process that marks the end of a woman’s reproductive years. During this time, the body undergoes significant hormonal changes that can affect various aspects of health and well-being. For women who are also caregivers, these changes can present additional challenges.

Hormonal changes affect energy and emotional resilience

Illustration of Hormones

The fluctuation and eventual decline of estrogen and progesterone levels during menopause can have a profound impact on energy levels and emotional stability. Many women report feeling more fatigued and less able to cope with stress during this time. This can be particularly challenging for caregivers, who often need to maintain high levels of energy and emotional resilience to meet the demands of their role.

The impact of caregiving during menopause

Woman holding elderly woman's hands

Menopausal symptoms can significantly affect a woman’s ability to provide care. Some of the most common symptoms include:

These symptoms can make it harder for caregivers to perform their duties effectively and may lead to increased stress and burnout. MayoClinic reported that caregiving for 15 hours or more each week makes menopause symptoms worse.

Statistics on menopausal caregivers

The overlap between menopause and caregiving is significant. According to a study published in Mayo Clinic Proceedings,19.7% of women aged 45-60 self-identified as caregivers. This age range coincides with the typical onset of menopause, which occurs around age 51 for most women in the United States.

Health consequences of neglecting self-cares

Neglecting self-care can have serious health consequences. Research has shown that caregivers who experience high levels of stress are at increased risk for various health problems, including heart disease, weakened immune function, gaining weight, and depression. When combined with the natural health risks associated with menopause, such as increased risk of osteoporosis and heart disease, the importance of self-care becomes even more critical.

Caregiver Burnout During Menopause

Caregiver burnout is a state of physical, emotional, and mental exhaustion that can occur when caregivers don’t get the help they need or try to do more than they’re able. During menopause, the risk of burnout may be even higher due to the added physical and emotional challenges women face.

Risks with caregiver burnout

Caregiver burnout is characterized by feelings of overwhelming exhaustion, detachment from the caregiving role, and a sense of hopelessness. During menopause, hormonal changes can amplify stress responses, making women more susceptible to burnout. The combination of caregiving duties and menopausal symptoms can create a perfect storm for physical and emotional depletion.

Warning signs specific to menopausal caregivers

While burnout can manifest in various ways, menopausal caregivers may experience some unique warning signs:

  • Extreme fatigue that isn’t relieved by rest
  • Increased irritability or mood swings
  • Withdrawal from social activities and relationships
  • Physical symptoms like headaches or digestive issues
  • Difficulty managing menopausal symptoms
  • Neglecting personal health and well-being

Hormonal fluctuations amplify stress responses

During menopause, fluctuations in estrogen and progesterone levels can affect the body’s stress response system. This can lead to an exaggerated reaction to stressors, making it harder for women to cope with the demands of caregiving. Additionally, the decline in estrogen can impact the production of stress-regulating neurotransmitters, potentially leading to increased anxiety and depression.

Importance of validating experiences and seeking support

Your experiences as a menopausal caregiver are valid and that seeking support is not a sign of weakness. Share their experiences with trusted friends, family members, or support groups specifically for menopausal caregivers.

Essential Self-Care Strategies for Menopausal Caregivers

Self-care is not a luxury for menopausal caregivers—it’s a necessity. Implement effective self-care strategies to help manage both your menopause symptoms and caregiver stress.

Hormone-balancing nutrition

A balanced diet can help alleviate some menopausal symptoms and provide the energy needed for caregiving. Consider the following nutritional strategies:

  • Increase intake of phytoestrogens found in soy products, flaxseeds, and legumes
  • Consume foods rich in calcium and vitamin D to support bone health
  • Include omega-3 fatty acids from fish or supplements to support mood and cognitive function
  • Limit caffeine, alcohol, and spicy foods that may trigger hot flashes

Exercise routines for menopause symptoms and caregiver stress

Regular physical activity can help manage both menopause symptoms and caregiver stress. Aim for a combination of:

Sleep hygiene tips for menopausal caregivers

Quality sleep is essential for managing stress and hormonal changes. Try these sleep hygiene tips:

  • Maintain a consistent sleep schedule
  • Create a cool, dark sleeping environment
  • Avoid screens before bedtime
  • Practice relaxation techniques before sleep

Mindfulness and stress reduction techniques

Incorporating mindfulness practices into daily routines can help manage stress and improve emotional well-being. Consider:

Here’s some more ways to prevent burnout.

Creating Sustainable Caregiving Systems During Menopause

Developing sustainable caregiving systems is crucial for maintaining long-term health and well-being during menopause.

Communicate needs and limitations

Open communication with family members and care recipients is essential. Be honest about your capabilities and limitations, especially on days when menopause symptoms are particularly challenging. Use “I” statements to express your needs without placing blame, for example: “I need help with meal preparation today because I’m experiencing severe fatigue.”

Delegate caregiving tasks

Don’t hesitate to delegate tasks to other family members or professional caregivers. Create a list of tasks that can be shared and assign them based on individual strengths and availability. A study in The Gerontologist found that caregivers who shared responsibilities reported lower levels of stress and better mental health.

Building support networks and respite care options

Develop a strong support network that includes:


Regular respite care can provide much-needed breaks to reduce stress and help prevent burnout. .

Digital tools and resources for efficient caregiving

Leverage technology to streamline caregiving tasks:

Healthcare Considerations for Menopausal Caregivers

As a menopausal caregiver, it’s very important to make your personal health a priority to maintain your well-being and caregiving abilities.

Make and keep regular health appointments

Despite busy schedules, regular health check-ups are essential. These appointments provide opportunities to:

  • Monitor menopause symptoms and overall health
  • Discuss preventive care strategies
  • Address any emerging health concerns

Questions to discuss with healthcare providers

Prepare a list of questions for your healthcare provider, such as:

  • What treatment options are available for my specific menopause symptoms?
  • How can I manage the stress of caregiving during menopause?
  • Are there any screenings or preventive measures I should consider?

Check out this blog for more questions to ask them.

Treatment options compatible with caregiving duties

Woman using a cream for hormone replacement therapy (HRT)

Discuss treatment options that fit your lifestyle as a caregiver:

  • Hormone replacement therapy (HRT) if appropriate
  • Non-hormonal medications for specific symptoms
  • Lifestyle modifications and complementary therapies

When to seek additional support

Be aware of signs that indicate a need for additional support:

  • Persistent feelings of sadness or anxiety
  • Inability to perform caregiving duties
  • Thoughts of self-harm or harming others

Financial Planning During the Menopause and Caregiving Years

Financial planning is a crucial aspect of managing the dual challenges of menopause and caregiving.

The impacts of caregiving on finances during menopause

Caregiving can have significant financial implications, including:

An AARP report found that family caregivers spend an average of $7,242 per year on out-of-pocket costs related to caregiving.

Healthcare coverage and benefits for caregivers

Explore available healthcare coverage and benefits:

Resources for financial planning

Utilize financial planning resources tailored to menopausal caregivers:

  • Consult with a financial advisor experienced in caregiving issues
  • Attend workshops on financial planning for caregivers
  • Use online tools and calculators to assess financial needs

Work accommodations for menopausal caregivers

Discuss potential work accommodations with your employer:

  • Flexible work hours to manage caregiving responsibilities
  • Telecommuting options to balance work and care duties
  • Employee assistance programs for counseling and support

A study in the journal Work & Stress found that flexible work arrangements (FWAs) are associated with reduced work-family conflict and improved well-being for caregivers.

You may also qualify for leave under the Family and Medical Leave Act (FMLA)—check with your employer, and learn about your rights under that law.

Finding harmony between the personal journey of menopause and the demands of caregiving requires intention, support, and compassion—especially for yourself. By implementing the strategies discussed in this guide, you can better manage your menopausal symptoms while continuing to provide quality care for your loved ones.

Taking care of your own health isn’t selfish—it’s essential for sustainable caregiving. Reach out to healthcare providers, support groups, and community resources to create a network that supports both your caregiving role and your personal well-being during this significant life transition.

References

Botek, A. Caregiving and Menopause: How to Handle the Double-Whammy. AgingCare. Retrieved from https://www.agingcare.com/Articles/handle-menopause-while-caregiving-153320.htm

Braun, N. (2024). Caring for Yourself While Caring for Others. Versalie. Retrieved from https://www.versalie.com/blogs/learn/caring-for-yourself-caring-for-others

Brown, R. M. (2024). There’s an App for That: Reducing Stress in Peri- And Post-Menopausal Women. Doctor of Nursing Practice Final Manuscripts. 285. doi.org/10.22371/07.2024.020

Bryan, L. & Dweck, A. (2024). How Can Menopause Affect Sleep. Sleep Foundation. Retrieved from https://www.sleepfoundation.org/women-sleep/menopause-and-sleep

Building a Network: The Social Benefits of Caregiver Support Groups. (2024). Trualta. Retrieved from https://www.trualta.com/resources/blog/building-a-network-the-social-benefits-of-caregiver-support-groups/

Building a Support Network: Finding Help as a Caregiver. (2024). Elder-Well Adult Day Program. Retrieved from https://elderwelladultday.com/building-a-support-network-finding-help-as-a-caregiver/

Caregiver Burnout. Cleveland Clinic. Retrieved from https://womenshealth.gov/a-z-topics/caregiver-stress

Caregiver stress. (2025). Office on Women’s Health. Retrieved from https://womenshealth.gov/a-z-topics/caregiver-stress

Crickmar, R. (2025). The Importance of Self-Care for Parents and Caregivers: Prioritizing Yourself To Support Your Family. Therapeutic Partners. Retrieved from https://therapeuticpartners.com/2025/02/06/the-importance-of-self-care-for-parents-and-caregivers-prioritizing-yourself-to-support-your-family/

Fatigue and menopause: tips to boost energy. (2024). Balance-Menopause. Retrieved from https://www.balance-menopause.com/menopause-library/fatigue-and-menopause-tips-to-boost-energy/

Hayes, J. & Rose, B. (2024). Caregiving as a Women’s Health Issue. NextAvenue. Retrieved from https://www.nextavenue.org/caregiving-as-a-womens-health-issue/

How expert financial advice can help to close the menopause retirement gap. (2024). Foster Denovo. Retrieved from https://www.fosterdenovo.com/how-expert-financial-advice-can-help-to-close-the-menopause-retirement-gap/

Li, Q. (2024). Sandwich caregiving and midlife women’s health: An examination of racial disparities. Family Relations, 73(5), 3291-3308. https://doi.org/10.1111/fare.13083

Menopause and money: Why financial planning is so important. (2024). RBC Brewin Dolphin. Retrieved from https://www.brewin.co.uk/insights/menopause-and-money-why-financial-planning-is-important

Menopause and the workplace. (2023). NHS inform. Retrieved from https://www.nhsinform.scot/healthy-living/womens-health/later-years-around-50-years-and-over/menopause-and-post-menopause-health/menopause-and-the-workplace/

Miller, H. (2024). Menopause & Stress. Dutch Test. Retrieved from https://dutchtest.com/articles/menopause-stress

Miller, S. (2024). From Hot Flashes to Health Costs: The Financial Impact of Menopause on Women. BayView Financial Planning. Retrieved from https://bayviewfp.com/from-hot-flashes-to-health-costs-the-financial-impact-of-menopause-on-women/

Newson, L. (2024). Coping with perimenopause when you’re a carer. Balance-Menopause. Retrieved from https://www.balance-menopause.com/menopause-library/coping-with-the-perimenopause-when-youre-a-carer

Prioritizing care for others, women often neglect their own health. (2020). American Heart Association. Retrieved from https://www.goredforwomen.org/en/beyond-the-table/stories/women-often-neglect-their-own-health

Saadedine, M., Safwan, N., Kapoor, E., et al. (2025). Association of Informal Caregiving and Menopause Symptoms in Midlife Women: A Cross-Sectional Study. Mayo Clinic Proceedings, 100(1), 42-51. Retrieved from https://www.mayoclinicproceedings.org/article/S0025-6196(24)00353-7/fulltext

Shakeel, W. (2024). Menopause Self Care: A Comprehensive Guide. Revive Research Institute. Retrieved from https://www.reviveresearch.org/blog/menopause-self-care

Shifrin, N. V., & Michel, J. S. (2021). Flexible work arrangements and employee health: A meta-analytic review. Work & Stress, 36(1), 60–85. doi.org/10.1080/02678373.2021.1936287

Snelling, S. (2015). When Menopause and Caregiving Collide. NextAvenue. Retrieved from https://www.nextavenue.org/when-menopause-and-caregiving-collide/

Skufca, L. (2021). Caregiving Can Be Costly – Even Financially. AARP. Retrieved from https://www.aarp.org/pri/topics/ltss/family-caregiving/family-caregivers-cost-survey/

Stress and your health. (2025). Office on Women’s Health. Retrieved from https://womenshealth.gov/mental-health/good-mental-health/stress-and-your-health

Taking Care of Yourself: Tips for Caregivers. (2023). National Institute on Aging. Retrieved from https://www.nia.nih.gov/health/caregiving/taking-care-yourself-tips-caregivers

Vazquez, E. K. (2025). The Impact of Hormones on Mental Health. Medens Health. Retrieved from https://www.medenshealth.com/blog/the-impact-of-hormones-on-mental-health

Medicare Benefits and Financial Support for Family Caregivers

Medicare Benefits and Financial Support for Family Caregivers

Caregiving

As the population ages and more people require care at home, they rely on family caregivers more and more. As of 2023, 42 million Americans provide unpaid care to an adult family member. While this care is invaluable, it often creates financial strain. 

Thankfully, various Medicare and government assistance programs can help ease this burden by providing financial support for family caregivers. 

Whether you’re new to caregiving or have been supporting a loved one for years, understanding these financial resources is paramount. So let’s explore the ways these programs can provide financial assistance to family caregivers.

Contents

Medicare Coverage for Family Caregivers

To effectively support family caregivers, it’s essential to understand how Medicare can provide indirect assistance through its coverage of home health services.

Home health nurse helps man walk

Medicare benefits that support family caregivers

Medicare, the federal health insurance program for people 65 and older and some younger individuals with disabilities, doesn’t directly pay family members to provide care. But it offers some benefits that cover specific home health services.

Medicare Part A and Part B may cover eligible home health services if the recipient needs part-time or intermittent skilled care and is considered “homebound,” such as:

  • Part-time skilled nursing care
  • Physical therapy
  • Occupational therapy
  • Speech-language pathology services
  • Medical social services
  • Part-time home health aide care (when receiving other skilled services)
  • Durable medical equipment and medical supplies

Denise M. Brown is Founder and CEO of The Caregiving Years Training Academy, a family caregiving agency that coordinates care across multiple systems. She says Medicare Part B reimburses for Caregiver Training, Community Health Integration Services and Principal Navigation Services

Family caregivers can receive these services on behalf of a Medicare beneficiary if that beneficiary cannot participate in care planning because of their illness.

Medicare’s Consumer-Directed Personal Assistance Program

The Consumer Directed Personal Assistance Program (CDPAP) lets individuals manage their own care through self-directed services. 

This program enables Medicaid beneficiaries to choose their own caregivers, including family members or friends, offering more flexibility compared to traditional home care services. 

Unfortunately, Medicare does not typically cover CDPAP because it is a Medicaid program, not a Medicare program.

Coverage limitations and eligibility requirements

Bert Hofhuis of Sovereign Boss in the UK says that many insurance plans, including Medicare and private insurance, have limitations on what they cover for in-home care. “For example, Medicare may cover some home health services but often does not cover custodial care.”

To be eligible for Medicare home health benefits, a beneficiary must meet certain qualifications:

  1. They must be under a doctor’s care and receiving services under a plan of care established and regularly reviewed by a doctor.
  2. A doctor must certify that they need intermittent skilled nursing care or physical therapy, speech-language pathology, or continued occupational therapy services.
  3. The home health agency providing services must be Medicare-certified.
  4. A doctor must certify that the beneficiary is homebound, meaning leaving home is a considerable and taxing effort.

Note that Medicare’s coverage for home health services is limited. For instance, it doesn’t cover 24-hour-a-day care at home, meals delivered to the home, or homemaker services when this is the only care needed.

Medicare’s application process

Medicare card and Rx closeup

To access Medicare home health benefits:

  1. Discuss your needs with your doctor. They can help determine if you qualify for home health services and can provide a referral.
  2. Choose a Medicare-certified home health agency. You can use Medicare’s Home Health Compare tool to find agencies in your area.
  3. The home health agency will schedule an appointment to talk about your needs and explain their services.
  4. The agency will keep your doctor updated on your care and will update your plan of care as needed.

While these services can provide some temporary relief, they don’t eliminate the need for family caregivers.

State-Specific Financial Assistance Programs

Beyond Medicare, various state-specific financial assistance programs can offer vital support to family caregivers, enabling them to receive compensation for their caregiving efforts.

Medicaid Self-Directed Care programs by state

While Medicare doesn’t directly pay family caregivers, many states offer Medicaid Self-Directed Care programs that allow beneficiaries to hire and pay family members as caregivers. These programs vary by state in terms of eligibility requirements and payment amounts.

For example, as of March 2024, all 50 states and D.C. have at least one program that provides assistance to elderly individuals living outside of nursing homes. A few examples:

State-specific caregiver compensation programs

Man holding Medicare card

Some states have implemented specific programs to compensate family caregivers. For instance, Oklahoma became the first state to pass an expansive tax credit for family caregivers in 2023. This trend might encourage other states to follow suit.

Home and Community Based Services (HCBS) waivers

HCBS waivers, also known as 1915(c) waivers, allow states to pay for care and support services for individuals residing outside of nursing homes. These waivers often cover personal care and chore services provided to elderly or disabled individuals living in their own homes or the homes of family members.

For example, Georgia offers two waiver options that help with home care: CCSP and SOURCE. Both waivers offer similar benefits and have similar eligibility requirements.

Local resources and support organizations

Local resources and support organizations can also provide valuable assistance to family caregivers, which may include:

  • Area Agencies on Aging
  • Local chapters of disease-specific organizations (Alzheimer’s Association)
  • Community centers and senior centers
  • Faith-based organizations

These organizations often offer resources, support groups, and sometimes even small grants or respite care services.

Direct Payment Programs for Family Caregivers

Beyond Medicare and tax benefits, several direct payment programs exist that can financially assist family caregivers, recognizing the crucial role they play in the care of their loved ones. 

Older man with white hair using tablet

Veterans Administration caregiver benefits

The Department of Veterans Affairs (VA) offers several programs that can pay family caregivers of eligible veterans:

  1. Program of Comprehensive Assistance for Family Caregivers (PCAFC): This program provides a monthly stipend, access to health care insurance, mental health services, and respite care for eligible veterans and their family caregivers.
  1. Veteran-Directed Care (VDC) Program: This program gives veterans a flexible budget for long-term services and supports that can be managed by the veteran or their family caregiver.
  1. Aid and Attendance (A&A) Benefits: This is an increased monthly pension amount for qualified veterans and survivors who require the aid and attendance of another person.

Long-term care insurance policies

70% of people over 65 require some type of Long-Term Services and Supports (LTSS), which is not covered under Medicare or most private health insurance plans.

However, some long-term care insurance policies allow payments to family caregivers. For example, The Colorado Respite Commission has programs and a webinar detailing how caregivers there can get paid for their in-home caregiving services.

If your loved one has a long-term care insurance policy, check with the insurance provider for details on whether it covers care provided by family members.

Social Security benefits for caregivers

Nurse helping woman get off couch with walker

While Social Security doesn’t directly pay benefits to caregivers, there are a few ways caregivers might benefit:

  1. Spousal Benefits: If you’re caring for a spouse who receives Social Security benefits, you may be eligible for spousal benefits.
  1. Disabled Adult Child Benefits: If you became disabled before age 22 and are now caring for a parent who receives Social Security, you might qualify for benefits on your parent’s record.
  1. Supplemental Security Income (SSI): If you’re providing care and have limited income and resources, you might be eligible for SSI.

Personal care agreements

A personal care agreement is a contract between a family caregiver and their loved one that details the care provided and the payment for those services. While not a government program, this formal arrangement can help protect a senior’s eligibility for Medicaid and provide legal compensation for the caregiver.

Tax Benefits and Credits for Family Caregivers

Family caregivers may also find relief through tax benefits and credits that can help offset the costs associated with providing care for their loved ones.

The coordination of benefits between private insurance and Medicare/Medicaid is something Shawn Plummer, CEO of The Annuity Expert educates his customers about. For example, he explains that determining the primary and secondary payers can help maximize coverage and minimize out-of-pocket expenses. Additionally, exploring supplemental insurance options can fill gaps not covered by primary insurance plans.

Nurse with elderly man making crafts

Federal tax deductions

Caregivers may be eligible for several federal tax deductions:

  1. Medical expenses
  2. Dependent Care Credit 
  3. Head of Household status

Medical expense deductions

You can include various medical expenses in your itemized deductions, such as:

  • Payments for diagnosis, cure, mitigation, treatment, or prevention of disease
  • Transportation to medical care
  • Long-term care services
  • Insurance premiums for long-term care insurance (subject to limitations)

You can only deduct the amount of your total medical expenses that exceed 7.5% of your adjusted gross income. This can include expenses you pay for a qualifying relative.

Dependent care credits

Mother with sick child on couch and red laptop - pediatric telehealth

The Child and Dependent Care Credit can be claimed if you paid expenses for the care of a qualifying individual to enable you (and your spouse, if filing jointly) to work or actively look for work. If you’re caring for a spouse or dependent who is physically or mentally incapable of self-care, you might qualify for this credit.

For 2024, the credit is up to $3,000 of expenses for one qualifying individual or $6,000 for two or more qualifying individuals.

Head of household status

If you’re single and paying more than half the cost of keeping up a home for a qualifying person, you may be able to file as head of household, which comes with a higher standard deduction and lower tax rates.

State-specific tax benefits

Some states offer additional tax benefits for caregivers. For example:

  • Oregon offers a credit for elderly care expenses.
  • Maryland has a Long-Term Care Insurance Premium Tax Credit.
  • Montana provides a credit for elderly care expenses for certain low-income individuals.

More tips to navigate complex insurance hurdles

Calculator

Dr. Caryn McAllister of High Quality Therapy, Hofhuis and Plummer share more tips to navigate complex insurance issues:

  • Understand the specifics of health insurance policies: Ask questions about things you don’t understand, and “seek plans that cover in-home care services, medical supplies, and home modifications to be prepared,” says Hofhuis. “It’s essential to review policy details and consider supplemental insurance to cover gaps.” 
  • Take notes: “When dealing with insurance representatives on the phone, always write down the name of the person you speak with, information regarding the call and a reference for the call. Write everything down and email as much as possible so you have proof of everything,” Dr. Allister says.
  • Use HSAs and FSAs: When available, Plummer and Hofhuis recommend using HSAs and Flexible Savings Accounts (FSAs), which can provide tax-advantaged funds that can be used for medical expenses, including caregiving costs.
  • Plan for long-term care: Consider purchasing long-term care insurance early to cover potential future caregiving needs.
  • Keep records for tax purposes: Keep detailed records of caregiving expenses, as some may be tax-deductible, potentially easing your financial burden, Plummer and Hofhuis concur. 

Always check with your state’s tax authority or a tax professional for the most up-to-date information on state-specific tax benefits.

Additional Financial Support Resources

In addition to direct payments and tax benefits, there are numerous financial support resources available that can provide caregivers with much-needed assistance and respite. 

Respite care funding

Respite care provides temporary relief for primary caregivers. You may be able to access funding for respite care through:

  • National Family Caregiver Support Program (NFCSP)
  • State respite coalitions
  • Disease-specific organizations (Alzheimer’s Association)
  • Non-profit organization grants

Several non-profit organizations offer grants to caregivers. For example:

  • The Alzheimer’s Foundation of America offers grants for respite care.
  • The National Multiple Sclerosis Society provides grants for home modification and assistive technology.

Family leave benefits

The Family and Medical Leave Act (FMLA) provides eligible employees with up to 12 weeks of unpaid, job-protected leave per year to care for a spouse, child, or parent with a serious health condition. Some states have expanded on this with paid family leave programs.

Emergency financial assistance programs

In times of crisis, emergency financial assistance may be available through:

  • Local social services departments
  • Community action agencies
  • Faith-based organizations
  • Disease-specific organizations

Applying for Caregiver Compensation

The application process for caregiver compensation can be complex, but understanding the necessary steps can simplify the journey toward receiving financial support.

Nurse helps someone with a cane

Required documentation

When applying for caregiver compensation programs, you may need to provide:

  • Proof of the care recipient’s medical condition
  • Financial records
  • Caregiver qualifications
  • Detailed care plan
  • Proof of relationship to the care recipient

Eligibility assessment process

The eligibility assessment typically involves:

  1. Initial screening (often over the phone)
  2. In-home assessment by a social worker or nurse
  3. Review of medical records
  4. Financial eligibility determination

Application timeline expectations

The application process can vary widely depending on the program and your location. It can take anywhere from a few weeks to several months. Be prepared for potential delays and follow up regularly on your application status.

Appeals process information

If your application is denied, you usually have the right to appeal. The appeals process typically involves:

  1. Requesting a hearing within a specified timeframe (often 30-60 days)
  2. Submitting additional documentation
  3. Attending a hearing (in person or by phone)
  4. Receiving a written decision

Navigating these programs can be complex. Don’t hesitate to seek help from local aging services professionals or elder law attorneys to understand all options and eligibility requirements in your specific situation.

Being a family caregiver shouldn’t mean sacrificing your financial security. By taking advantage of Medicare benefits, state programs, and various financial assistance options, you can continue providing essential care while maintaining stability. Start by exploring the programs most relevant to your situation, and don’t hesitate to reach out to local aging services for guidance. Remember, investing time in understanding these resources today can lead to better support for both you and your loved one tomorrow.

References

Bouilier, S. (n.d.). Family Caregiver Compensation: Long Term Care Insurance. RubyWell. Retrieved from  https://www.rubywell.com/blog/does-long-term-care-insurance-pay-family-caregivers

Compensation For Caregiving. (n.d.). Colorado Respite Coalition. Retrieved from https://coloradorespitecoalition.org/family-caregivers/compensation-for-caregiving.php

Does Social Security Pay You to Take Care of a Family Member? (2024). HumanCare. Retrieved from  https://www.humancareny.com/blog/social-security-pay-you-to-take-care-of-a-family-member

Goad, K. (2024). Credit for Caring Act Offers Relief for Financially Strained Family Caregivers. AARP. Retrieved from https://www.aarp.org/caregiving/financial-legal/info-2024/credit-caring-act.html

Family Caregiver Services and Supports. (n.d.). The National Academy for State Health Policy. (NASHP). Retrieved from https://nashp.org/family-caregiver-services-and-supports/

Favreault, M., Dey, J., Anderson, L., Lamont, H., & Marton, W. (2023). Future Change in Caregiving Networks: How Family Caregivers and Direct Care Workers Support Older Adults Now and in the Future. Assistant Secretary for Planning and Evaluation. Retrieved from https://aspe.hhs.gov/sites/default/files/documents/a449863a8c93838d37f78ccf29e9231f/future-change-caregiving-networks.pdf

Financial Assistance for Caregivers of Elderly Parents. (2024). Regency Health Care. Retrieved from https://www.regencyhcs.com/blog/financial-assistance-for-caregivers-of-elderly-parents

Fletcher, K. (2022). Does Medicare Pay for a Caregiver? Oak St. Health. Retrieved from https://www.oakstreethealth.com/does-medicare-pay-for-a-caregiver-727397

How Much Care Will You Need? (2020). Administration for Community Living. Retrieved from https://acl.gov/ltc/basic-needs/how-much-care-will-you-need

How to Become a Paid Caregiver for a Family Member: 6 Steps to Uncovering Financial Assistance Options for Family Caregivers. (2023). Careforth. Retrieved from  https://careforth.com/blog/how-to-become-a-paid-caregiver-for-a-family-member-6-steps-to-uncovering-financial-assistance-options-for-family-caregivers/

Medicaid & Home Care: State by State Benefits & Eligibility. (2024). Paying for Senior Care. Retrieved from https://www.payingforseniorcare.com/medicaid-waivers/home-care

Reasons Medicare Doesn’t Cover CDPAP. (2024). Nautilus Senior Home Care. Retrieved from  https://www.nautilusshc.com/blog/reasons-medicare-doesnt-cover-cdpap

Schier-Akamelu, R. (2023). 2023 Caregiver Burnout and Stress Statistics. A Place for Mom. Retrieved from https://www.aplaceformom.com/senior-living-data/articles/caregiver-burnout-statistics

The Benefits of Caregiver Contracts: Ensuring Clarity and Boundaries. (2024). HumanCare. Retrieved from https://www.humancareny.com/blog/caregiver-contracts

The Program of Comprehensive Assistance for Family Caregivers. (n.d.). U.S. Department of Veterans Affairs. Retrieved from https://www.va.gov/family-and-caregiver-benefits/health-and-disability/comprehensive-assistance-for-family-caregivers/

Topic no. 602, Child and Dependent Care Credit. (n.d.). Internal Revenue Service. Retrieved from https://www.irs.gov/taxtopics/tc602

VA Caregiver Support Program: The Program of Comprehensive Assistance for Family Caregivers. (n.d.). U.S. Department of Veterans Affairs. Retrieved from https://www.caregiver.va.gov/support/support_benefits.asp

Why Doesn’t Medicare Cover CDPAP? (2024). Consumer Director Choices. Retrieved from https://www.cdchoices.org/2024/05/02/why-doesnt-medicare-cover-cdpap/

How to Find Respite Care: A Guide for Caregivers

How to Find Respite Care: A Guide for Caregivers

Caregiving

Are you a caregiver feeling overwhelmed and in need of a break? You’re not alone. Caring for a loved one can be rewarding, but it’s also demanding. According to the National Alliance for Caregiving, only 14% of family caregivers use respite services, often because they don’t know how to find respite care. 

Whether you need a few hours weekly or extended relief, this guide will walk you through the essential steps to find, arrange, and pay for quality respite care. This article will help you navigate the options and create a plan that works for both you and your loved one.

Contents

What is respite care?

Respite care provides temporary relief for primary caregivers, allowing them to take a break from their caregiving duties. This break can be short-term or extended, depending on the caregiver’s needs and the available services.

Health aide hanging up clothes in elderly woman's closet

Types of respite care

There are several types of respite care available:

  • In-home respite care
  • Adult daycare centers
  • Residential facilities offering short-term stays
  • Informal respite care from family and friends

Each type has its own benefits and considerations. For example, in-home respite care allows your loved one to remain in familiar surroundings, while adult daycare centers provide opportunities for socialization.

Benefits of respite care

Nurse with elderly man using toys for dexterity

Respite care offers numerous benefits for both caregivers and care recipients:

  1. Reduced stress and burnout for caregivers
  2. Improved mental and physical health
  3. Enhanced relationships between caregivers and care recipients
  4. Opportunities for socialization and new experiences for care recipients

A study in Taiwan found that caregivers who used in-home respite care for more than 14 days experienced a significant decrease in caregiver burden scores (Liao et al., 2022).

Policy initiatives such as the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act, the 2022 National Caregiver Strategy and the 2023 White House Executive Order (#14095) concur that respite is an essential component of caregiver support.

Assessing your respite care needs

Before you start looking for respite care services, it’s important to assess your needs and those of your loved one.

Aide helping woman put on pink sweater

Identify your caregiving responsibilities

Make a list of all the tasks you perform as a caregiver. This might include:

  • Personal care (bathing, dressing, grooming)
  • Medication management
  • Meal preparation
  • Transportation
  • Housekeeping
  • Emotional support

Determine the frequency and duration of respite care

How often do you need a break? For how long? Consider your personal commitments, health needs, and stress levels. Some caregivers benefit from regular, short breaks, while others may need occasional extended periods of respite.

Consider your loved one’s preferences and needs

What type of care would your loved one be most comfortable with? Do they have specific medical or personal care needs that require specialized attention? Involving your loved one in the decision-making process can help ensure a smoother transition to respite care.

Exploring respite care options

Now that you’ve assessed your needs, it’s time to explore the available respite care options in your area.

Nurse helping woman get off couch with walker

In-home respite care

In-home respite care involves a professional caregiver coming to your home to provide care. This option allows your loved one to remain in familiar surroundings while you take a break.

Adult daycare centers

Adult daycare centers provide care and companionship for older adults who need assistance or supervision during the day. These centers often offer activities, meals, and sometimes health services.

Residential facilities for short-term stays

Some assisted living facilities and nursing homes offer short-term stays for respite care. This option can be particularly helpful if you need an extended break or if your loved one requires round-the-clock care.

Informal respite care

Families with a child who has special care needs can feel left out and isolated. According to a recent study in Romania, this is because they often don’t have the energy to take part in social activities, or because friends may worry about being asked to help care for a child with complex needs (Hizanu et al., 2024).

Don’t overlook the potential for informal respite care from family members, friends, or community volunteers. While this option may not be suitable for all situations, it can provide valuable support and flexibility. Don’t assume they’ll say no.

Finding respite care providers

Once you’ve decided on the type of respite care that best suits your needs, it’s time to find providers in your area.

Nurse and a man in a wheelchair in the park

Research local options

Start by researching respite care providers in your community. You can:

  • Use online directories and search tools
  • Contact your local Area Agency on Aging
  • Ask for recommendations from healthcare providers or support groups

Evaluate provider qualifications and services

When considering a respite care provider, ask about:

  • Staff qualifications and training
  • Services offered
  • Availability and scheduling flexibility
  • Cost and payment options
  • Emergency procedures

Check references and reviews

Don’t hesitate to ask for references from other families who have used the service. Online reviews can also provide valuable insights, but remember to consider them as part of a broader evaluation.

Preparing for respite care

Proper preparation can help ensure a smooth transition to respite care for both you and your loved one.

Male nurse helps man in shorts into a wheelchair

Make a care plan

Develop a detailed care plan that includes:

  • Your loved one’s daily routine
  • Medication schedules
  • Dietary requirements
  • Emergency contact information
  • Any specific care instructions

Introduce your loved one to the idea of respite care

Talk to your loved one about respite care well in advance. Explain the benefits and address any concerns they may have. If possible, arrange a visit to the respite care facility or a meeting with the in-home caregiver before the actual respite period.

Prepare your home for in-home respite care

If you’re opting for in-home respite care, ensure your home is ready. This might involve:

  • Clearing space for the caregiver to work
  • Ensuring necessary supplies are easily accessible
  • Providing clear instructions on household routines and emergency procedures

Overcoming barriers to respite care

Despite its benefits, many caregivers face challenges in accessing or using respite care services.

Two sets of hands making a heart shape

Address financial concerns

Respite care can be expensive, but there are ways to manage the costs:

  • Check if your loved one’s insurance covers respite care
  • Look into government programs or grants for caregivers
  • Consider sliding scale fees offered by some providers
  • Explore community-based or volunteer respite care options

Deal with guilt and anxiety

Research by Hizanu et al (2024) included parents of children in hospice care that were anxious about leaving them with strangers. For respite care to work well, parents need to know details like the type of care, location, safety measures, and schedule. They also need to trust the care provider.

It’s common for caregivers to feel guilty or anxious about taking a break. Remember that respite care benefits both you and your loved one. Taking care of yourself allows you to be a better caregiver in the long run.

Overcoming resistance from your loved one

Your loved one may initially resist the idea of respite care. Be patient and:

  • Explain the benefits of respite care for both of you
  • Start with short periods of respite and gradually increase
  • Involve them in choosing the type of respite care when possible

Respite care isn’t one-size-fits-all. But it can help reduce the stress of caregiving if it’s tailored to the family’s needs.

Making the most of respite care

Once you’ve arranged respite care, it’s important to use this time effectively.

Aide hugging her patient in wheelchair

Set goals for your respite time

Think about what you want to achieve during your break. This might include:

  • Attending to your own health needs
  • Pursuing a hobby
  • Catching up with friends
  • Getting extra sleep

A study conducted in Japan found that family caregivers experienced reduced cardiac sympathetic nervous activity (less stress on their hearts) while asleep on the days they used short-stay respite services (Sakuri and Kohno, 2020). This suggests that regular use of such services can improve caregivers’ sleep quality and relaxation.

Practice self-care

Use your respite time to focus on self-care activities that rejuvenate you. This could involve exercise, meditation, or simply doing activities you enjoy.

The Hizanu study (2024) also found that respite care programs are helpful for parents of children with life-limiting illnesses or special needs, as well as their siblings. The main benefit for exhausted parents was getting time to relax and socialize without constant caregiving duties. 

Stay connected with your loved one

While it’s important to take a break, staying connected can help alleviate anxiety for both you and your loved one. Consider:

  • Scheduling check-in calls
  • Leaving notes or small gifts for your loved one
  • Asking the respite care provider for updates

Evaluating and adjusting respite care

After using respite care services, take time to evaluate the experience and make adjustments as needed.

Woman puts blanket on her mom

Assess the quality of care

Consider factors such as:

Communicate with respite care providers

Maintain open communication with your respite care provider. Share feedback, address any concerns, and discuss any changes in your loved one’s needs or care plan.

Adjust your respite care plan as needed

Be prepared to adjust your respite care plan over time. Your needs and those of your loved one may change, requiring modifications to the type, frequency, or duration of respite care.

Getting respite care is a vital step in maintaining your well-being as a caregiver. It provides much-needed breaks, reduces stress, and can improve the overall caregiving experience. 

Start by assessing your needs, exploring local options, and reaching out to organizations that can help with funding and placement. 

Self-care isn’t selfish–it’s essential for providing the best care possible to your loved one. With proper planning and support, you can find a respite care solution that works for both you and your loved one.

References

2022 National Support for Caregivers. (2022). Administration for Community Living. Retrieved from https://acl.gov/CaregiverStrategy

Hizanu, Dumitrache M., Boeriu, E., Tanasescu, S., Balan, A., Oprisoni, L.A., Popa, M.V., Gutu, C., Vulcanescu, D.D., Bagiu, I.C., Bagiu, R.V., Dragomir, T.L., Boru, C., Avram, C.R., & Duceac, L.D. (2024). Benefits of Respite Services on the Psycho-Emotional State of Families of Children Admitted to Hospice Palliative Care Unit: Preliminary Study on Parents’ Perceptions. Healthcare (Basel). doi: 10.3390/healthcare12070748

Liao, Y.H., Ku, L.E., Liu, L.F., & Li, C.Y. (2022). The Effects of In-Home Respite Care on the Burden of Caregivers in Taiwan. Journal of Applied Gerontology; 41(5):1283-1292. doi: 10.1177/07334648211073876 

Recognize, Assist, Include, Support, Engage (RAISE) Family Caregiver Act, United States House of Representatives, 115th Congress (Session 1) Sess (2017/2018).

Sakuri, S. & Kohno, Y. (2020). Effectiveness of Respite Care via Short-Stay Services to Support Sleep in Family Caregivers. International Journal of Environmental Research and Public Health; 17(7):2428. doi:10.3390/ijerph17072428