Changes in Alzheimer’s Programs Could Threaten Progress for People Living with Dementia, Caregivers

CHICAGO, Apr. 1, 2025 — The Alzheimer’s Association is sounding the alarm about the actions taken today by the Department of Health and Human Services (HHS) that may undermine our nation’s response to the dementia public health crisis.

Programs like the Healthy Brain Initiative and Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s, both of which had staff placed on administrative leave as part of the reduction in force at HHS today, have a meaningful impact on Americans everyday. The BOLD program, as well as other Alzheimer’s programs, were just unanimously reauthorized by Congress in December.

“These public health programs are critical to Alzheimer’s/dementia awareness and brain health in communities across the nation. Among other things, they ensure that people living with dementia, caregivers and health providers have the information, resources and support they need,” said Joanne Pike, DrPH, Alzheimer’s Association president and CEO. “The programs remain intact, but continuing on a path of reducing staff and resources could cause irreversible damage.”

Without these programs, people may not have the information to make brain healthy choices to reduce their risk of Alzheimer’s, and be less likely to get a diagnosis or seek treatment.

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What to Expect When Coming Home After a Hospitalization

Our team is often called to assist older adults transitioning home from the hospital or skilled nursing care. Successfully caring for a senior transitioning home requires planning and coordination, depending on the level of care needed. For family caregivers, making a home care plan following a hospital discharge helps avoid rehospitalization. Taking a proactive approach and anticipating health changes may avoid a crisis and keep stress low for everyone. 

Facts about hospitalization

• Older adults are much more likely to be admitted to the hospital than middle aged adults. 
• Men are more likely to be hospitalized than women. 
• Adults over 85 are admitted at the highest rate – 26% were admitted at least once last year. 
• When an older adult is admitted to the hospital the research shows they may take weeks to months to return to their previous level of strength and independence. 
• It is difficult to avoid the physical and mental decline older adults suffer after a hospitalization. 
• Top diagnoses for hospitalizations – septicemia, heart failure, osteoarthritis, pneumonia, and diabetes mellitus. 
• Septicemia and pneumonia are acute illnesses that can be cured. 
• Heart failure, osteoarthritis and diabetes are chronic conditions requiring ongoing management to avoid rehospitalizations. 

As the old saying goes “an ounce of prevention is worth a pound of cure.” In this case, it is very true. It is preferable to prevent hospitalizations instead of allowing health to deteriorate to the point a hospitalization is necessary. We all agree hospitals provide life-saving treatments for those battling illness or injury. If someone is admitted to the hospital, they meet the criteria their insurance company requires to pay for the room, medications, and other costs associated with treatment of their diagnosis. This often means the person being admitted is very sick and is not stable or safe to return home to receive treatment at home or in a medical clinic. Their care requires 24 hour observation by nurses and monitoring machines. Life-saving treatment notwithstanding, it is the rare person that enjoys their hospital stay or wants to stay any longer than necessary. The 24 hour activity, noise and lights making sleep impossible makes the home seem like a relaxing oasis. 

What to expect upon discharge home from hospital or skilled nursing care

It can be an enormous relief to hear from the doctor “Your family member has recovered enough to go home.” The next feeling after relief is often panic when you need to figure out how to transition your family member back home. Talk with your hospital discharge planning team, they can connect you with resources in your area that can help support the transition to home. Here is some additional helpful information we share with our families: 

Do a Care Trial – Are you the primary caregiver? To do a Care Trial, spend a 24 hour period in the hospital providing the care for the hospitalized person. Try not to use the call-button unless necessary. The Care Trial is critical to understanding care needs and your care capabilities. If there is a care mismatch between the needs of the person and abilities of the caregiver, the gap can be mediated before discharging home and a crisis situation develops. I haven’t located any studies that discuss Care Trials. It is a strategy we used here at HelloCare to determine the readiness of the care team for discharge and reduce the risk of caregiver burnout, mismatch and readmissions. 

Routines might be different – The return home can be joyous, being in familiar surroundings can have a calming effect. Pets, home made foods and family are all appreciated with more joy and energy. Conversely, if a fall or accident precipitated the admission, there can be some anxiety around similar activities. Fear of showering is common after a fall. If your loved one is feeling extra vulnerable bathing, a shower chair may be helpful. Some shower chairs have a sliding bench that can make getting in and out of the shower more comfortable. 

Have as many tasks completed before the person arrives home – Can you pick up the medication or direct someone else to? There may be shortages in medication or supplies – better to know before leaving the hospital where a supply may be provided of missing items. Special food (like clear liquids or soft textures), hospital bed, or wheelchair can all be in the home before your loved one arrives home. Delivery times can be unpredictable. Try to minimize the variables that can cause stress by planning ahead. Try to have delivery of any needed equipment the day before discharge. This allows time to assemble items and get other last minute necessities. 

Prepare for confusion – Older adults with hospital stay longer than 2 days can suffer from a condition similar to jet-lag. The 24 nature of a hospital makes restful sleep difficult. Mixing up day and night, disorientation even in familiar surroundings are common. Research shows, people with cognitive impairment may have reduced brain functioning for weeks to months after returning home. Give your loved one time to readjust, and have a plan for other trusted caregivers to help to allow everyone to rest. 

Learn when to call the doctor to avoid readmission – while your loved-one is ready to discharge home, they may need close follow up care by their doctor. If you need to call for advice after hours or on weekends, have that number handy. 

Risk factors for readmission include:

• Older adults admitted to the hospital with multiple chronic conditions
• Admitted emergently rather than electively
• Taking 5 or more medications
• Non-compliant or unclear about their home treatment
• No follow up appointment with PCP
• Discharged on a Friday
• Male 

Readmissions can be demoralizing, but sometimes necessary. If you are managing a new diagnosis for yourself or a loved one, get familiar with the early signs of trouble. For example a person with heart failure may notice swelling in the ankles and weight gain as an early sign of worsening heart function. A speedy recognition of symptoms and a call to the doctor can avoid a hospitalization.  

Ready for weakness – during a hospitalization people are often in bed most of the day and may be discouraged from getting out of bed and moving around unless hospital staff is at their side. A recent study of college students instructed to stay in bed for 3 days, showed decreased physical strength for 3 months. These were college students! Deconditioning and muscle weakness is so common after a hospitalization medical billers have a code for it. 

Know when to expect the home health team – do you have home health, hospice or home care upon return home? Have the contact information of the office or scheduler. Know when to expect the initial visit, and know who to call if they don’t show up as expected. The visiting nurses, therapists and caregivers are crucial in the first days at home. Know who to call with questions and have the phone number handy. 

Get the PCP involved – if your loved one is lucky enough to have a solid, longstanding relationship with their primary care provider (PCP), make an appointment to be seen soon after returning home. The PCP will help stabilize health and medications, refer to specialists and order tests to monitor recovery. This is an important piece of the puzzle to avoid rehospitalization. 

Knowing what to expect when caring for a family member after a hospitalization can help you manage the transition with minimal stress. Learn your resources and don’t be afraid to ask for help. 

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Fighting Holiday Depression and Anxiety: A Guide for Seniors

At CareAvailability, we understand the holiday season can be a time of joy and celebration, but for many seniors, it can also bring feelings of loneliness, sadness, or anxiety. Changes in family dynamics, memories of loved ones who have passed, or even the stress of holiday preparations can take a toll on mental well-being. Recognizing these challenges and finding ways to fight holiday depression and axiety is crucial for maintaining mental health during this time of year.

Understanding Holiday Depression and Anxiety

Holiday depression and anxiety are common among seniors for several reasons:

• Isolation: Seniors who live alone or are far from family may feel left out of holiday celebrations.
• Grief: The holidays can trigger memories of loved ones who are no longer around.
• Stress: Managing travel plans, financial pressures, or even attending events can feel overwhelming.

The good news is there are proactive steps seniors can take to combat these feelings.

Tips for Managing Holiday Depression and Anxiety

1. Stay Connected
   • Reach out to family and friends via phone, video calls, or in-person visits.
   • Join community events or holiday gatherings at senior centers, churches, or local organizations.
2. Set Realistic Expectations
   • It’s okay to simplify traditions. Focus on what brings you joy and avoid overcommitting.
3. Practice Self-Care
   • Maintain a healthy diet, exercise regularly, and get enough sleep.
   • Try mindfulness exercises like meditation or deep breathing to reduce stress.
4. Volunteer
   • Helping others is a great way to shift your focus and feel a sense of purpose. Local charities often need volunteers during the holidays.
5. Limit Alcohol and Sugar
   • Overindulgence in alcohol and sugary treats can worsen mood and energy levels.
6. Talk About Your Feelings
   • Share how you’re feeling with someone you trust. Sometimes, simply voicing your concerns can help you feel lighter.

When to Seek Professional Help

If feelings of depression or anxiety persist or worsen, it’s important to seek professional support. Symptoms to watch for include:

• Loss of interest in activities you once enjoyed
• Persistent feelings of sadness or hopelessness
• Difficulty sleeping or changes in appetite

Resources for Mental Health Support

Here are national organizations that provide mental health resources and support for seniors:

1. National Alliance on Mental Illness (NAMI)
   • Website: www.nami.org
   • Helpline: 1-800-950-NAMI (6264)
   • NAMI offers resources, support groups, and advocacy for individuals dealing with mental health challenges.
2. Substance Abuse and Mental Health Services Administration (SAMHSA)
   • Website: www.samhsa.gov
   • Helpline: 1-800-662-HELP (4357)
   • SAMHSA provides confidential support and information for mental health and substance use issues.
3. Eldercare Locator
   • Website: www.eldercare.acl.gov
   • Helpline: 1-800-677-1116
   • This service connects seniors and their caregivers to local resources, including mental health support.
4. Crisis Text Line
   • Website: www.crisistextline.org
   • Text: HOME to 741741
   • A free, 24/7 text line that connects you with a trained crisis counselor.

The holiday season doesn’t have to be a time of struggle. By taking proactive steps to connect with others, care for your physical and mental well-being, and seeking professional help when needed, seniors can find joy and peace during this festive season. Remember, you are not alone, and there are many resources available to support you.

If you or someone you love is struggling with mental health during the holidays, don’t hesitate to reach out for help. Your well-being is the greatest gift of all.

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Pivotal Legislation to Renew National Commitment to Addressing Alzheimer’s Signed into Law

Two pieces of critical bipartisan legislation that renew the nation’s commitment to the fight against Alzheimer’s and other dementia were signed into law: the NAPA Reauthorization Act and the Alzheimer’s Accountability and Investment Act. These bipartisan bills will continue the critical work of the National Plan to Address Alzheimer’s Disease to support Alzheimer’s research and improve the delivery of clinical care and services for people impacted by Alzheimer’s.

“Today is a significant day for those impacted by Alzheimer’s and other dementia throughout the nation. With the NAPA Reauthorization Act and the Alzheimer’s Accountability and Investment Act signed into law, our nation has taken a major step forward in the fight against this devastating disease,” said Robert Egge, Alzheimer’s Association chief public policy officer and AIM president. “On behalf of the Alzheimer’s Association, thank you to our outstanding congressional champions on both sides of the aisle for your steadfast leadership and tireless efforts to advance these bills across the finish line.”

The NAPA Reauthorization Act reauthorizes the National Alzheimer’s Project Act (NAPA) (P.L. 111-375) by extending the strategic National Plan and emphasizing the importance of healthy aging and risk reduction. Prior to NAPA, there was no comprehensive plan to address Alzheimer’s. In 2010, for every dollar the federal government spent on the cost of Alzheimer’s care, it invested less than a penny on research for the disease. NAPA has fundamentally changed the way the nation addresses Alzheimer’s and all other dementia.

The Alzheimer’s Accountability and Investment Act builds on the original Alzheimer’s Accountability Act (AAA), which was first enacted in 2014. This bipartisan legislation ensures Congress will continue to hear directly from scientists at the National Institutes of Health (NIH) on the Alzheimer’s and dementia research funding needed to achieve the goals in the National Plan.

“Today we can reflect on how far we’ve come since the passage of NAPA and AAA. We now have multiple Food and Drug Administration (FDA)-approved Alzheimer’s treatments, better understanding of risk factors and prevention, improved dementia care and support, and we are closer than ever to biomarker tests, which will improve access to earlier and more accessible diagnosis,” said Egge. “With these two reauthorizations, the progress of the next decade will bring additional breakthroughs that improve the lives of people living with Alzheimer’s and other dementia and their families.”

The NAPA Reauthorization Act and the Alzheimer’s Accountability and Investment Act were introduced by Sens. Susan Collins (R-Maine), Ed Markey (D-Mass.), Shelley Moore Capito (R-W.Va.), and Mark Warner (D-Va.) in the Senate, and Reps. Chris Smith (R-N.J.), Paul Tonko (D-N.Y.) and Maxine Waters (D-Calif.) in the House.

“Over the last decade, Congress has taken action to make historic investments in Alzheimer’s research, expanded the dementia public health infrastructure and improved access to quality care and support,” said Egge. “Thanks to our incredible advocates and bipartisan congressional champions, our nation is enacting laws like the NAPA Reauthorization Act and the Alzheimer’s Accountability and Investment Act, changing the trajectory of this devastating disease until we one day achieve our vision of a world without Alzheimer’s and all other dementia.”

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Today the Senate unanimously passed bipartisan legislation that will renew the nation’s commitment to addressing the Alzheimer’s crisis — the NAPA Reauthorization Act (S. 133 / H.R. 619) and the Alzheimer’s Accountability and Investment Act (S. 134 / H.R. 620). The Alzheimer’s Association and the Alzheimer’s Impact Movement (AIM) are proud to spearhead these critical bills, which now head to the floor of the U.S. House of Representatives. 

“By passing the NAPA Reauthorization Act and the Alzheimer’s Accountability and Investment Act today, the Senate has taken the next step to ensure that our nation continues making progress in the fight against Alzheimer’s and all other dementia,” said Robert Egge, Alzheimer’s Association chief public policy officer and AIM president. “On behalf of the Alzheimer’s Association and AIM, thank you to Sens. Susan Collins, Ed Markey, Shelley Moore Capito and Mark Warner for your leadership on these critical bills. We are grateful for your longstanding dedication to improving the lives of those impacted by this devastating disease.” 

“Alzheimer’s is currently ranked as the seventh leading cause of death in the United States and nearly seven million Americans are living with the disease. It is also one of the most expensive diseases for society, costing an estimated $360 billion last year alone,” said Sen. Susan Collins (R-Maine). “Reauthorization of NAPA and the Alzheimer’s Accountability and Investment Act would ensure our country is maintaining momentum in our fight against Alzheimer’s, just as our investments in research are beginning to translate into promising new treatments.”  

“Alzheimer’s is a scourge that needs to be defeated,” said Sen. Edward Markey (D-Mass.). “I learned a lot from my father and his dedication to my mother…These families are heroes, but heroes need help.” 

The NAPA Reauthorization Act would reauthorize the National Alzheimer’s Project Act (NAPA) (P.L. 111-375), landmark legislation signed into law in 2011. This bipartisan legislation also emphasizes the importance of healthy aging and risk reduction for Alzheimer’s disease to reflect the new sixth goal of the National Plan. It also adds new federal representatives to the NAPA Advisory Council from the Department of Justice (DoJ), the Federal Emergency Management Agency (FEMA), and the Social Security Administration (SSA). Additionally, the NAPA Reauthorization Act underscores and addresses health disparities among underrepresented populations.

With the original provisions of the Alzheimer’s Accountability Act, which was enacted in 2014, set to expire soon, Congress must pass the Alzheimer’s Accountability and Investment Act to continue the progress being made in Alzheimer’s and dementia research. This bipartisan bill would require the National Institutes of Health (NIH) to continue to submit an annual Professional Judgment Budget to Congress to ensure Alzheimer’s and dementia research is funded at the levels needed to achieve the goals in the National Plan to Address Alzheimer’s Disease. With robust and steady investment, scientists will be able to work faster to advance basic disease knowledge, explore ways to reduce risk, uncover new biomarkers for early diagnosis and drug targeting, and develop potential treatments.

“Together, the NAPA Reauthorization Act and the Alzheimer’s Accountability and Investment Act will work to ensure the critical work of the National Plan to Address Alzheimer’s Disease continues to improve the lives of those impacted by Alzheimer’s throughout the nation,” said Egge. “We look forward to the House swiftly taking action on these key pieces of bipartisan legislation.”

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Alzheimer’s Association Welcomes FDA Advisory Committee Unanimous Vote of Efficacy of Donanemab for the Treatment of Early Alzheimer’s Disease

The Alzheimer’s Association welcomes today’s U.S. Food and Drug Administration (FDA) advisory committee’s unanimous finding that donanemab (Eli Lilly) is effective for the treatment of early Alzheimer’s disease, which includes mild cognitive impairment and mild Alzheimer’s dementia, and that the treatment’s benefits outweigh the risks.

If approval is granted by the FDA, donanemab will be the second traditional approval of an Alzheimer’s treatment that changes the underlying course of the disease, and the third FDA approval overall in this class of treatments.

“A future with more approved Alzheimer’s treatments is a tremendous advancement for people eligible for these drugs. Progress with treatment is happening,” said Joanne Pike, DrPH, Alzheimer’s Association president and CEO.

“Now we need more types of treatments, targeting a variety of aspects of the disease, with greater efficacy and safety. This will lead to possibilities for combination therapies that address the complexity of the disease. A rich and robust life without the threat of memory loss, confusion or cognitive decline: this is what we envision,” Pike said.

The Alzheimer’s Association and members of the Association’s Early Stage Advisory Group each submitted comments urging the Advisory Committee to recommend traditional approval of donanemab. The next regulatory step toward approval of the treatment is FDA review.

The Alzheimer’s Association is committed to working with health systems and providers to ensure they have the resources and infrastructure to meet the needs of their patients. The Association strongly encourages prescribers to participate in the Alzheimer’s Network for Treatment and Diagnostics (ALZ-NET), which is gathering real world data on how people from all backgrounds and communities respond to novel FDA-approved Alzheimer’s therapies.

“We look forward to more treatment options, and novel therapies that target other aspects of the disease, including lifestyle and behavioral-based interventions,” said Maria C. Carrillo, Ph.D., Alzheimer’s Association chief science officer and medical affairs lead. “We will hear results from a variety of Alzheimer’s and dementia treatments and risk reduction strategies at the Alzheimer’s Association International Conference (AAIC), July 28 to Aug. 1 in Philadelphia.”

Read the full article and learn more here.

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Starting the Conversation about Moving a Loved One into Memory Care

It’s a conversation no one looks forward to having. The moment when you realize that your loved one’s memory loss has progressed to a point where they require specialized care. It’s a tough decision, laden with emotions, concerns, and uncertainties. However, delaying the discussion won’t make the situation any easier. Initiating this conversation early on can lead to a softer, more personalized, and smoother transition for everyone involved. So, how do you start the dialogue about moving a loved one into memory care? Let’s explore some approaches with insights to navigate this sensitive topic.

First and foremost, it’s essential to recognize when memory care becomes necessary. Memory care communities of caring are designed to provide specialized support for people with Alzheimer’s disease, dementia, and other cognitive impairments. These specialized dementia care residences offer personalized care, including structured routines, cognitive stimulation, and 24/7 supervision, to ensure the safety and well-being of residents.

Family or friends may start observing signs that could indicate it may be time to consider seeking options for memory care.

• Safety concerns: If your loved one is frequently getting lost, experiencing falls, or exhibiting wandering behavior, it may be unsafe for them to continue living at home without constant supervision.

• Increased caregiving challenges: As cognitive decline progresses, the demands of caregiving can become overwhelming for family members. If you find yourself struggling to meet your loved one’s needs or experiencing caregiver burnout, it may be time to explore alternative care options.

• Decline in daily functioning: Difficulty with activities of daily living, such as bathing, dressing, and managing medications, can indicate the need for a higher level of care than can be provided at home.

What’s a good approach for initiating this conversation?

Bringing up the subject of moving into memory care requires sensitivity, empathy, and clear communication. Here’s a little advice for getting this sometimes-difficult conversation started:

• Choose the right time and place: Find a quiet, relaxed environment to have this private conversation without distractions. Avoid bringing up the topic during times of stress or conflict.

• Discuss using empathetic language: Express your love and concern and actively listen to your loved one’s feelings and concerns without judgment. Be honest about how hard this decision is for everyone involved.

• Emphasize the focus on their safety and quality of life: The primary goal of moving into memory care is to ensure their safety and well-being. Frame the conversation around the benefits of receiving specialized care in a supportive environment.

• Engage your loved one in the decision-making process: Whenever possible, respect their preferences and wishes. Help them understand the reasons behind the need for memory care and involve them in touring communities of caring and making choices about their new living arrangements.

It’s natural for your loved one to have concerns and questions about moving into memory care. Addressing these apprehensions with honesty and transparency can help alleviate some of their fears.

What are some common concerns and how can they be addressed?

• Fear of losing independence: Reassure your loved one that memory care communities of caring are designed to promote independence within a safe and supportive environment. Emphasize that staff members are there to assist with activities of daily living while encouraging residents to remain as self-sufficient as possible.

• Worries about losing connection with family: Assure your loved one that moving into memory care doesn’t mean losing connection with family and friends. Share how the family and friends will visit regularly, and make phone calls, and they will continue to participate in family activities to maintain social connections and support.

• Concerns about unfamiliar surroundings: Moving to a new environment can be intimidating, especially for individuals with memory loss. Take time to tour memory care communities of caring together, allowing your loved one to become familiar with the surroundings and meet staff members before making a decision. Work with the community and staff to attend events and activities before moving in to provide a level of familiarity and comfort.

• Financial considerations: Discuss the financial aspects of memory care openly, based on the abilities of your loved one to understand. As a decision maker, explore options for funding, such as long-term care insurance, Veterans benefits, family assets, or Medicaid, and seek guidance from financial advisors or elder law attorneys if needed.

Once the decision to move into memory care has been made, the transition process can be challenging for the individual and their family members. Here are some tips for making the transition as smooth as possible:

• Involve the memory care staff: How can you involve the memory care staff effectively? Share essential information about your loved one’s medical history, routines, and preferences to ensure continuity of care. Additionally, include details about important people in their life and favorite stories, treating them as a whole person rather than just a diagnosis.

• Create a familiar environment: Bring familiar items from home, such as photos, keepsakes, and favorite belongings, to help your loved one feel more comfortable in their new surroundings. Establishing routines and maintaining familiar rituals can also provide a sense of stability and security.

• Stay involved and supportive: Continue to be actively involved in your loved one’s life after they move into memory care. Visit regularly, participate in activities together, and advocate for their needs to ensure they receive the highest quality of whole-person care.

• Take care of yourself: Caring for a loved one with memory loss can be emotionally and physically exhausting. Remember to prioritize self-care and seek support from healthcare professionals, support groups, and memory care communities of caring to help you navigate the challenges of caregiving.

Sarah’s Story

She is a vibrant woman who has always been the life of the party. She loved hosting family gatherings, where her warmth and energy lit up the room. However, as Sarah’s dementia progressed, her family began to notice subtle changes in her behavior. She would forget names, misplace belongings, and become disoriented in familiar places. Concerned for her safety, Sarah’s family knew it was time to discuss memory care.

Sarah’s daughter, Emily was tentative to bring this up to her mom. She worried about how she would react and whether she would feel abandoned. However, intuitively Emily knew that delaying this conversation would only prolong her mom’s vulnerability. With a heavy heart, Emily sat down with her mom and gently broached the topic of moving into a memory care community of caring.

To her relief and surprise, Sarah was more receptive than she anticipated. Though apprehensive about leaving her home, Sarah acknowledged her increasing struggles and expressed a desire for support. Together, they visited several memory care communities of caring and found one where they both felt welcomed and reassured by the compassionate staff.

As Sarah settled into her new home, Emily remained actively involved, visiting her daily on her way home from work. They ate dinner together several times a week and other family members visited on the weekends. Though the transition had its challenges, with a few tears and laughter intermingled, Sarah found comfort in the familiar faces and routines of her new community of caring…as did Emily.

Starting the conversation about moving a loved one into memory care is never easy, but it’s a crucial step in ensuring their safety, well-being, and quality of life. By approaching the discussion with empathy, honesty, and sensitivity, you can help ease the transition for your loved one and ensure they receive the care and support they need. Remember, you’re not alone on this journey.

Reach out to healthcare professionals, support groups, and memory care communities of caring for guidance and assistance every step of the way.

Here are some support groups for individuals with family members diagnosed with Alzheimer’s/Other dementia’s

Alzheimer’s Association

• Website: alz.org

Dementia Society of America

• Website: dementiasociety.org

National Institute on Aging

• Website: nia.nih.gov

These are just a few options, and there may be more available depending on your specific location. It’s always a good idea to check with local hospitals, community centers, or senior centers for additional support group options.

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The Longest Day: A Journey of Hope and Action

June is a month of warmth, light, and long days. It’s also a time when communities worldwide come together to shine a light on a cause that touches millions of lives: Alzheimer’s & Brain Awareness Month. This month is dedicated to raising awareness, fostering understanding, and encouraging action in the fight against Alzheimer’s disease and other forms of dementia. Among the many events and initiatives that take place, one stands out for its powerful symbolism and collective spirit—the Longest Day.

Understanding Alzheimer’s & Brain Awareness Month

Alzheimer’s & Brain Awareness Month is a global initiative led by the Alzheimer’s Association. The goal is to educate the public about Alzheimer’s disease, share stories, and promote brain health. Alzheimer’s is a progressive brain disorder that impacts memory, thinking, and behavior. It is the most common cause of dementia, affecting millions of individuals and their families worldwide.

Throughout June, various activities, from informative seminars and community events to social media campaigns and fundraising efforts, aim to spread knowledge and support those impacted by Alzheimer’s. It’s a time to honor those affected, advocate for advancements in research and care, and work towards a future where this devastating disease is a thing of the past.

The Longest Day: A Symbol of Strength and Endurance

The Longest Day is held annually on or around the summer solstice, the longest day of the year. This event symbolizes the challenging journey of those living with Alzheimer’s and their caregivers. Participants are encouraged to engage in an activity they love—from hiking and biking to baking and painting—and dedicate it to the cause.

This year, on June 21st, people from all walks of life will come together, channeling their passions into actions that raise awareness and funds for Alzheimer’s care, support, and research. Whether it’s a solo endeavor or a community event, every effort contributes to the collective fight against this disease.

How You Can Get Involved

There are numerous ways to participate in Alzheimer’s & Brain Awareness Month and the Longest Day:

1. Join an Event: Participate in local or virtual events dedicated to raising awareness and funds.
2. Host Your Activity: Choose an activity you love, set a goal, and invite friends and family to join you in supporting the cause.
3. Wear Purple: Show your support by wearing purple, the official color of the Alzheimer’s movement, and sharing your commitment on social media.
4. Donate: Contribute to organizations like the Alzheimer’s Association to fund research and provide support services for those affected. Donate to our team’s goal.
5. Share Your Story: Use social media platforms to share your experiences with Alzheimer’s, spreading awareness and encouraging others to get involved.

The Power of Community and Awareness

Alzheimer’s & Brain Awareness Month and the Longest Day are about more than just raising funds; they’re about fostering a sense of community and hope. By coming together, we can support each other, share our stories, and push for the advancements needed to conquer Alzheimer’s disease.

As we embrace the warmth and light of June, let’s also embrace the opportunity to make a difference. Every action, no matter how small, contributes to a larger movement that brings us closer to a world without Alzheimer’s. Together, we can turn the longest day into a beacon of hope and a testament to the strength of the human spirit.

Join the fight this June—because the end of Alzheimer’s starts with you.

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Caregivers often bear the responsibility of providing transportation, with over 40 percent of older and disabled adults relying on family, friends, or neighbors for rides. A 2021 survey by the National Aging and Disability Transportation Center (NADTC), administered by USAging and Easterseals, found that around three-quarters of caregivers list providing or arranging transport as one of their primary duties.

According to USAging, the national association for Area Agencies on Aging, approximately 600,000 older adults give up driving each year. This transition can create challenges for aging or ill loved ones, making it harder for them to attend medical appointments, shop for necessities, visit family, or participate in social events. Consequently, this increased isolation negatively impacts their health and well-being.

To address these challenges, it’s important to explore alternative transportation options. While available services vary by location, several programs and services are generally accessible across the country to help older and disabled individuals maintain their independence and social connections.

Understanding Different Services

Transportation plays a crucial role in maintaining the independence and quality of life for seniors. As individuals age, driving may become more challenging or even impossible due to health issues or other limitations. Fortunately, there are various transportation options specifically designed to meet the needs of older adults.

From public transit and paratransit services to ride-sharing apps and volunteer driver programs, seniors have access to a range of choices that can help them stay connected, access essential services, and remain active in their communities. Understanding these options is key to ensuring that seniors can continue to live independently and engage in meaningful activities as they age.

Public Transit

Fixed-route public transit refers to a transportation system with predetermined routes, schedules, and stops, such as buses, trains, or trolleys. These services operate along fixed paths, picking up and dropping off passengers at designated stops along the way.

For seniors and individuals with disabilities, fixed-route public transit can be a convenient and cost-effective way to travel, providing access to essential services, activities, and destinations within a community. However, there are navigational and accessibility-related challenges that may arise for these populations when using fixed-route public transit. To address these challenges, many fixed-route public transit systems offer specialized services or accommodations for seniors and individuals with disabilities:

1. Priority Seating: Individuals with mobility impairments may  find it challenging to board or disembark from vehicles, especially at stops without accessible features. Reserved seating near the front of vehicles can mitigate challenges for seniors and individuals with disabilities.
2. Accessibility Features: Waiting for and riding on fixed-route transit vehicles can be physically demanding for some seniors and individuals with disabilities, particularly those with mobility issues. Vehicles equipped with ramps, lifts, and other features can better accommodate mobility devices.
3. Travel Training: Seniors and individuals with cognitive impairments may find it difficult to navigate the fixed-route system, including understanding schedules, routes, and transfer points. These programs provide instruction on how to use the fixed-route system safely and independently.

Paratransit Services

Paratransit services are specialized transportation services designed to meet the needs of individuals who are unable to use traditional fixed-route public transit due to a disability or condition. These services are typically provided as a complement to regular public transit and are mandated by the Americans with Disabilities Act (ADA) for public transit agencies in the United States.

Paratransit services offer door-to-door or curb-to-curb transportation for individuals who are unable to access or navigate traditional buses or trains. This includes individuals with mobility impairments, visual or hearing impairments, cognitive disabilities, or other conditions that prevent them from using regular public transit.

To use paratransit services, individuals must typically qualify based on their disability or condition, as defined by the ADA. Once eligible, passengers can schedule rides in advance, usually with a designated paratransit provider. The provider will then pick up the passenger from their location and transport them to their destination.

Paratransit vehicles are often equipped with features to accommodate passengers with disabilities, such as wheelchair ramps, lifts, and securement systems. Drivers are trained to assist passengers with boarding, securing mobility devices, and other needs they may have during the trip.

Demand Response Services

Demand response transportation services for seniors, also known as Dial-a-Ride or paratransit services, provide flexible and on-demand transportation options for older adults who may have difficulty using traditional public transit. These services are typically operated by public transit agencies or private companies and are designed to meet the specific needs of seniors and individuals with disabilities. These services typically operate through the following formats:

1. Reservation-Based: Seniors can request transportation by calling a designated phone number or using an online booking system. Reservations are usually required in advance, typically 24 hours or more. 
2. Flexible Pick-Up and Drop-Off: Unlike fixed-route public transit, demand response services offer more flexibility in terms of pick-up and drop-off locations. Seniors can be picked up from their homes or other specified locations and dropped off at their destination.
3. Shared Rides: Demand response services often operate on a shared-ride basis, meaning that multiple passengers may be picked up and dropped off along the same route. This helps maximize efficiency and reduce costs.
4. Accessible Vehicles: Vehicles used for demand response services are often wheelchair-accessible and equipped with features to accommodate passengers with mobility challenges.
5. Affordable or Subsidized Fare: While fares for demand response services may vary, many agencies offer discounted fares for seniors and individuals with disabilities.

Non-Emergency Medical Transportation (NEMT)

Non-emergency medical transportation (NEMT) is a specialized service that provides transportation for individuals who require medical services but do not have access to personal vehicles or other means of transportation. NEMT services are typically used by individuals who need to travel to medical appointments, such as doctor visits, dialysis treatments, physical therapy sessions, and other non-emergency medical appointments.

NEMT services are often covered by Medicaid, private insurance, or Medicare Advantage plans, although coverage and eligibility criteria may vary. NEMT providers may include taxis, wheelchair-accessible vans, or vehicles dispatched by specialty brokers or community groups.

To use NEMT services, individuals typically need to schedule their transportation in advance, usually at least 24 hours before their appointment. The transportation provider will then pick them up from their home or another designated location and take them to their medical appointment. After the appointment, the provider will return them to their original location.

NEMT services often include accommodations for individuals with disabilities, such as wheelchair-accessible vehicles and assistance with boarding and disembarking. Providers may also offer door-to-door service for individuals who need assistance getting in and out of vehicles or navigating through buildings.

Ride-Sharing and Taxi Services

Ride-sharing and taxi services can be valuable transportation options for seniors, offering flexibility and convenience for those who may not drive or have access to public transit. These services can help seniors maintain their independence, stay connected with their communities, and access essential services and activities.

Ride-sharing services like Uber and Lyft, as well as traditional taxi services, offer on-demand transportation, allowing seniors to request rides quickly and easily using a smartphone app or by calling a taxi company. Many ride-sharing companies and taxi services offer accessible vehicles and accommodations for passengers with disabilities or mobility challenges, such as wheelchair-accessible vehicles or assistance with boarding and disembarking.

Ride-sharing and taxi services can be a flexible transportation option for seniors, allowing them to travel at their own pace and schedule, without the constraints of fixed routes or schedules. Using ride-sharing and taxi services can help seniors stay engaged with their communities, allowing them to attend social events, visit friends and family, and access local services and amenities.

Click here for full article and to see a full list of resources by state.

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Types of Dementia

Dementia encompasses a group of disorders characterized by declining cognitive function that interferes with daily life. People with a dementia diagnosis are typically over 60 years of age. However, people as young as their early 40s can also be diagnosed with dementia, which is rare. In addition, some patients may have more than one type of dementia. 

For example, a person might have both Alzheimer’s disease and vascular dementia simultaneously, or they could be diagnosed with Alzheimer’s and Lewy bodies (explained below). When you have more than one type of dementia, this is known as having mixed dementia. While there are many types of dementia, these are the most common forms of the disease that people are diagnosed with when receiving a dementia diagnosis.

Alzheimer’s disease is the most universal cause of dementia, accounting for almost half of all cases. Alzheimer’s is characterized by the accumulation of abnormal proteins, such as beta-amyloid plaques and tau tangles in the brain, leading to the death of neurons and a progressive decline in cognitive function. This disease affects all demographics, but you are more likely to have Alzheimer’s if you’re female, Black, or Hispanic.

Vascular dementia is the second most common form of dementia and results from reduced blood flow to the brain, often due to stroke or other vascular issues. The brain can no longer function efficiently because of reduced blood flow to the brain. Symptoms include typical dementia symptoms such as memory loss and personality change. In addition, patients with vascular dementia can also see an increase in incontinence, visual disturbances, and difficulty with balance and walking, putting them at significant fall risk.

Lewy Body dementia is abnormal protein deposits known as Lewy bodies in the brain. This type of dementia shares symptoms with both Alzheimer’s disease and Parkinson’s disease, including cognitive fluctuations, visual hallucinations, and motor symptoms.

Frontotemporal dementia affects the frontal and temporal lobes of the brain, which control logical thought. FD often presents with changes in personality, behavior, and language. Unlike Alzheimer’s disease, memory may remain relatively intact in the early stages of frontotemporal dementia, so the patient does not start with significant memory loss as in most other forms of dementia.

Parkinson’s Disease dementia is a dementia caused by Parkinson’s disease. It is a movement-based disorder that can also lead to cognitive decline and dementia in some individuals. The dementia associated with Parkinson’s disease often develops in the later stages (Stages 3 and 4) of the condition.

Huntington’s disease is a genetic disorder that effects Caucasians the most and can lead to dementia. This genetic disorder is characterized by progressive motor dysfunction, cognitive decline, and psychiatric symptoms.

Creutzfeldt-Jakob disease is a rare, rapidly progressive, and fatal brain disorder that is caused by abnormal prion proteins and leads to severe neurological symptoms, including dementia.

Normal Pressure Hydrocephalus is when excess cerebrospinal fluid accumulates in the brain’s ventricles, leading to difficulty walking, urinary incontinence, and cognitive decline.

Dementia Treatments do not Reverse Dementia

And because there is no cure for dementia, the available treatments primarily focus on managing symptoms and improving quality of life. While the effectiveness of medical treatments can vary depending on the type of dementia, there are some standard dementia care management practices that can be utilized depending on the types of symptoms the person with dementia is experiencing.

Dementia is typically characterized by the gradual and irreversible loss of cognitive function due to damage or degeneration of brain cells. The underlying causes of dementia vary, and they often involve complex changes in the brain that cannot be easily reversed. Here are some reasons why dementia is generally considered irreversible.

Why is Dementia Considered Irreversible?

Neurodegeneration is the process of brain cells, called neurons, becoming damaged and then dying off. Once neurons are damaged or die, they typically cannot regenerate or be replaced. Dementia is associated with specific pathological changes in the brain, such as the accumulation of abnormal proteins such as beta-amyloid plaques and tau tangles in Alzheimer’s disease and other structural abnormalities. These changes contribute to the decline in cognitive function.

The human brain is highly complex, with our cognitive function dependent on intricate networks of neurons and neurotransmitters. Restoring normal function to these networks once disrupted is a significant challenge and has yet to be achieved. Because of the many variables of dementia and the complexity of our brain, there is a lack of disease-modifying treatments for the reduction of symptoms. 

Currently, there are no widely accepted disease-modifying treatments for most forms of dementia. Medications available for some types of dementia, such as cholinesterase inhibitors and memantine, primarily focus on managing symptoms rather than reversing the underlying pathology.

Researchers are actively exploring potential disease-modifying treatments for dementia, and clinical trials are ongoing. These efforts aim to target the specific mechanisms that contribute to cognitive decline and, ideally, slow or halt the progression of the disease. However, finding effective treatments for dementia is a complex scientific challenge, and success in this area has been elusive so far.

Common Medical Treatments for Dementia

Cholinesterase Inhibitors such as Donepezil (Aricept), Rivastigmine (Exelon), and Galantamine (Razadyne) are often prescribed for Alzheimer’s disease. They work by increasing acetylcholine levels, a neurotransmitter deficient in the brains of people with Alzheimer’s disease. Cholinesterase inhibitors may help improve cognitive symptoms in some individuals.

NMDA Receptor Antagonists, like the formulation in Memantine (Namenda), are typically used to regulate moderate to severe Alzheimer’s disease. This drug regulates glutamate, another neurotransmitter involved in learning and memory. Memantine may help improve cognitive function and daily activities.

Combination therapy can offer patients more relief of symptoms by prescribing a combination of cholinesterase inhibitors and memantine to address different aspects of the disease and potentially enhance the overall therapeutic effect.

Managing underlying conditions such as high blood pressure, diabetes, or high cholesterol can increase the quality of life for someone with dementia, as these health conditions can contribute to the progression of dementia.

Individuals with dementia and their caregivers must work closely with medical professionals, developing a comprehensive care plan regularly maintained by medical professionals. Regular medical check-ups, monitoring of symptoms, and adjustments to the treatment plan are essential components of dementia care.

Remember that advancements in dementia research may lead to new treatment options, so staying informed about the latest developments is essential. Always consult with healthcare professionals for the most up-to-date information and personalized advice based on individual circumstances. One of the best resources to connect with for information surrounding dementia is the Alzheimer’s Association, which offers free resources and help lines to those dealing with dementia. 

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