Florida Girl Choreographs Contemporary Dance for Alzheimer’s Disease

At only seven-years-old, Gianna Pressa is acutely aware of the demands, devastation and devotion piled on the family members of those living with Alzheimer’s disease. It has been eight years since Leo Mantecon and her family were given the diagnosis of Alzheimer’s disease, and Gianna wanted to find a way to spark some joy among her loved ones—or perhaps even a memory for her great grandmother—through dance.

Gianna with GG

“I felt really sad, thinking about how pieces of her memory and mind are missing,” said Gianna. “I just wanted her and other people living with Alzheimer’s to know that even when they feel lost, they are not forgotten.”

Gianna has been dancing for three years. With a natural gift, she has been competing nationally and placing in competitions across the country for the past two and a half years. Inspired by her family’s experience with Alzheimer’s disease, Gianna worked with a choreographer, Alex Anthony, to translate those emotions into dance. Through Gianna’s love for her family and Anthony’s skill, the contemporary number “Memoria” was created.

“I had heard through Gianna’s mom that her grandmother has suffered from this terrible disease. I thought it was an amazing outlet for Gianna,” Anthony said. “Creating this solo, I was able to tap into my inner artistry and really connect with Gianna and her story. It gave me the inspiration to explore and create new moves for her.”

Gianna also helped design her costume—an Alzheimer’s Association® purple to represent the disease—which looks like pieces of fabric are missing, representing the missing pieces of her great grandmother’s memory.

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Donned in purple, Gianna recently took to the stage once again at the Hollywood Vibe Convention and Competition. Here, she received first place, platinum, best overall, and was also awarded a full ride scholarship from Hollywood Vibe worth thousands of dollars which will aid her in sharing her piece with even more people around the country.

“I don’t get nervous before I go on the stage, I just feel really amazing,” Gianna said. “My great grandmother has forgotten the people that she loves, but we have not forgotten her. That is why I made this dance.”

See Gianna’s full performance below.

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A Cross Country Bike Ride to Advocate for Alzheimer’s Disease

Alan Corsie of Kinross, Scotland wasn’t willing to sit idly by after his mother was diagnosed with early stage dementia in 2017. Having experienced the effect of the disease with his uncle as well as his grandmother, Corsie decided to embark on a Trans America cycle challenge to raise funds for Alzheimer’s Scotland. On October 1, 2017, Corsie began his ride in San Diego by dipping his bike tire in the Pacific Ocean. When a horrific accident could have derailed his journey, Corsie embodied the perseverance he knows to be key to any caregiver or person living with Alzheimer’s.

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Corsie at the beginning of his journey in California at the edge of the Pacific Ocean.

With his course mapped and his cause clear, Corsie rode from California to Arizona, on through New Mexico, Texas, Louisiana, Mississippi and Alabama. “Two weeks into my cycle and I have crossed three states and ridden over 1000 miles but there are still another four weeks and 2000 miles to go,” Corsie reports on his Facebook page while riding through New Mexico, “It occurred to me that cycling these long straight endless desert roads with little change in scenery is a bit like caring for someone with Alzheimer’s. You just have to get up each day and get on with it.”

With only 300 miles to go, Corsie crossed into Florida, eager to complete his journey and return home. However, while tending to his bike on the side of the road, Corsie was hit from behind by a vehicle traveling 55 mph. Severely injured, Corsie was taken to Tallahassee Memorial Hospital where he woke in the ICU with two broken legs, a punctured lung and other lower body injuries. Corsie spent two weeks in the hospital, undergoing three surgeries while capturing the hearts of his caregivers. With his incredible cause and story, Corsie left behind many admirers as he flew back to Scotland two weeks later to continue his recovery at home. “This trip has made me appreciate the preciousness of life,” said Corsie during his recovery in Tallahassee, “the gift of good health, the joy of love and family and friends. Job done.”

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Corsie and his riding team stop by the Walk to End Alzheimer’s in Tallahassee on Nov. 10, 2018.

Now, fully recovered, Corsie feels his job is not yet done. Exactly 52 weeks after his accident, Corsie pedals once again, starting in Chattahoochee with stops in Tallahassee, Madison, Ichetucknee, Gainesville, Palatka and ending in St. Augustine, Florida, where he will complete is 3,000 mile ride by dipping his tire in the Atlantic Ocean. Having raised over $5,800 for Alzheimer’s Scotland during his original ride, Corsie plans on donating the funds he raises during his last leg to the Alzheimer’s Association® of Central and North Florida as a way to show his appreciation for the care he received after his accident.

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Corsie and his riding team at the Walk to End Alzheimer’s in Tallahassee, Florida.

“I would like to say it is not me who is doing the hard work,” reflects Corsie, “it’s the people who wake up day after day to care for the people they love who’ve got Alzheimer’s. They are the ones doing the great thing.”

Corsie’s ride will be complete on Thursday, November 15 at Anastasia State Park in St. Augustine, Fla. The Alzheimer’s Association will be greeting Corsie and his team with a small ceremony to celebrate his ride. “Alan’s journey has been incredibly admirable, and we are grateful for his support in creating awareness of Alzheimer’s disease,” said Jessica Marshall, executive director of Alzheimer’s Association Central and North Florida chapter.

Art sessions for those in the early stages

The Alzheimer’s Association Memories in the Making program offers creative art expression for individuals in the early to the middle stages of Alzheimer’s or other dementia. People experiencing dementia are often able to paint their thoughts, emotions and memories in a manner that is expressive and beautiful. Art becomes their voice. Through painting, people are often able to reach outside of their dementia and paint a picture that reconnects them with a past memory.

Because there are no mistakes in art, creativity and fun are the primary focus.

Caregivers are welcome to attend and participate, but it is not required.!

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Please join us! Click on the city nearest you for dates, times and other details.

Maitland 

Orlando

Gainesville

New Smyrna Beach

Alzheimer’s & Dementia Preparedness Tips for Hurricane Michael

FLORIDA – Emergency situations, such as Hurricane Michael, can significantly impact everyone’s safety, but they can be especially upsetting and confusing for individuals living with Alzheimer’s and other dementias in any stage of the Helplinedisease. Being prepared is crucial. There are steps and precautions caregivers can take to be as ready as possible. Additionally, the Alzheimer’s Association staff can provide counseling, support and assist displaced families in finding care for their loved ones through a 24/7 helpline at 1.800.272.3900.

Advanced Preparations

•If the person with dementia lives in a residential building or attends an adult day center, learn about its disaster and evacuation plans. Find out who is responsible for evacuating everyone in the event of an emergency

•Be sure the evacuation plan takes special needs into consideration. For example, if a walker or wheelchair is used, how will accommodations be made?

•A Special Need Shelter provides more care and supervision that a general shelter to help meet any special needs during an evacuation. However, many of these shelters require you to pre-register and to reregister every year. Contact the special needs shelter in your county and find out what you need to do before a disaster happens

•If oxygen is used, be sure there is easy access to portable tanks

•Purchase extra medication; keep other supplies well stocked

•Provide copies of the person’s medical history, a list of medications, physician information and family contacts to people other than a partner/spouse

•Learn how to get prescriptions and care by downloading Medicare’s Getting Care and Drugs in a Disaster Area. It explains how Medicare beneficiaries have special rights to get out-of-network care if they live in an area where the President has declared a disaster

•Favorite items or foods, including some liquid mealFavorites(1)

•The person with the disease’s favorite item (book, picture, purse)

•Phone numbers for the Alzheimer’s Association (800.272.3900) and MedicAlert + Safe Return (800.625.3780)

•Enroll in MedicAlert® + Alzheimer’s Association Safe Return®, a 24-hour nationwide emergency response service for people with dementia and their caregivers

•Consider preparing an emergency kit in a watertight container and store it in an easily accessible location. Use waterproof bags to protect medications and documents. Items you may wish to include are:

•Easy on/off clothes (a couple of sets)Emergency Kit

•Supplies of medication (or, at least, a list of medications with dosages)

•Velcro shoes/sneakers

•A spare pair of eyeglasses

•Incontinence products, if needed

•Extra identification items such as an ID bracelet and clothing tags

•Copies of legal documents, such as a power of attorney

•Copies of medical documents that indicate the disease and current medications

•Copies of insurance and Social Security cards

•Physician’s name, address and phone numbers, including cell phone

•Recent picture of the person with dementia

•Hand lotion or other comfort items

•Bottled water

When You Know That an Emergency Is About to Take Place

•Get yourself and the person with Alzheimer’s to a safe place, and bring the Stay Safeemergency kit with you if this can be done safely

•If the need to evacuate is likely, do not delay. Try to leave as early as possible, as people with dementia do not move quickly. Try to keep calm, since the person may be particularly reactive to perceived upset. Leaving early will also tend to minimize long delays in heavy traffic, which can add stress for everyone

•Alert others (family, friends, medical personnel) that you are changing locations, and give them your contact information. Update them regularly as you moveUpdate friends and family

During an Evacuation

Even in the early stage of Alzheimer’s, changes in routine, traveling and new environments may increase the risk for wandering and agitation. Caregivers must stay alert for unexpected reactions that may result from these changes.

Share the diagnosis•When appropriate, share the diagnosis with others, such as hotel or shelterstaff, family members and airline attendants, so they can better assist

•Try to stay together or with a group; it only takes a moment to get lost. Do not leave the person with dementia alone

•Do your best to remain calm, as this may help establish a positive tone

Tips for Preventing Agitation

Be prepared for the person with dementia to experience some anxiety or confusion during an emergency. The following tips may help prevent agitation:Stay Alert

•Find outlets for anxious energy, such as taking a walk together or engaging in simple tasks

•Redirect the person’s attention if he or she becomes upset

•Move to a safer or quieter place, if possible. Limit stimulation

•Make sure the person is taking medications as scheduled

•Try to schedule regular meals and maintain the usual sleep schedule

•Avoid elaborate or detailed explanations. Use concrete terms

•Follow brief explanations with reassurance

•Be prepared to provide additional assistance with all activities of daily living

•Pay attention to cues such as fidgeting and pacing, which may indicate that the person is overwhelmed

•Remind the person that he or she is in the right place

•Helpful hints during an episode of agitation

•Approach the person from the front and use his or her name

•Use calm, positive statements and a patient, low-pitched voice

•Respond to the emotions expressed rather than the words. For example, “You’re frightened and want to go home. It’s OK, I’m here with you”

•Don’t argue with or correct the person. Instead, affirm his or her experience, reassure and try to divert attention. For example, “The noise in this shelter is frightening. Let’s see if we can find a quieter spot and look at your photo book”

Alzheimer’s Association®

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support and research. It is the largest nonprofit funder of Alzheimer’s research. The Association’s mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Its vision is a world without Alzheimer’s. Visit alz.org or call 800.272.3900.

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RivALZ Tallahassee: Blondes vs. Brunettes

This Saturday is the 5th year anniversary of The Alzheimer’s Association RivALZ: Blondes vs. Brunettes® game in Tallahassee. The Big Game will be held at Florida State University School (otherwise known as “Florida High”) on May 19, 2018 at 5:30 p.m. Gates will open at 4:30 p.m.

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Courtney Starling runs the football down the field.

Two teams of women – divided to reflect the age-old rivalry between blondes and brunettes – will compete in a flag football game to help raise awareness and funds in the fight against Alzheimer’s disease through the support of friends, families and fans.

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Kate Widness, Courtney Starling and Jossie Barroso (from left to right) plan for the next play.

Many of the players and coaches have a personal connection to Alzheimer’s disease. 

Kate Widness was one of the original players from the inaugural game five years ago. Why does she continue to play year after year?

“My grandmother was diagnosed with early stages of Alzheimer’s disease about five years ago. Since then, my mother has been her sole caretaker. Fortunately, my grandmother’s progression has been slow, but seeing the effects it has had on her and my mother has been truly eye opening to how awful this disease is on families. So I play for both my nonnie and my amazing mom.”

In 2017, the women of RivALZ were able to exceed their $20,000 goal by $3,000! This year, the goal is set even higher to $30,000.

More Game Info:

Tickets are available for purchase for $10 from any player, coach, or the Alzheimer’s Association staff for your admission to the game at Florida High! Children 12 and under may attend free of charge.

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Coach Sam McCray huddles with Tori Richmond, Annette LeFranc and other players on Team Brunette.

What happens game day? Gates open at 4:30pm and the game starts at 5:30 pm. Fans can support their favorite team by sporting their colors. Handmade signs, bells and noise makers are encouraged so fans can cheer their team on to victory! Family friendly/children’s activities, special guests and more will occur prior to and during the game.

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Thank you to our fantastic Community Sponsors!

Pope’s Pines

Clarity Pointe Tallahassee

Visiting Angels of Tallahassee

 

Honoring Mother’s Day When Mom Has Alzheimer’s — Tips From The Association

Tips For Celebrating Mother's Day When Mom Has Alzheimer'sHow families choose to celebrate Mother’s Day when mom has the disease depends on the person living with Alzheimer’s and the family’s unique situation. The Alzheimer’s Association® offers support and guidance to these families, to make​ ​celebrating these wonderful mothers​ ​positive experience for all.

The Alzheimer’s Association offers families the following tips:

Take a person-centered approach. Focus on what is enjoyable for the person with Alzheimer’s, such as looking at family pictures or enjoying the person’s favorite food. If they get overwhelmed in large groups, a small quiet gathering may be preferable.

Keep it simple. Consider a celebration over a lunch or brunch at home or where the person is most comfortable. Ask family or friends to bring dishes for a potluck meal or have food delivered by a local restaurant or grocery store.

Join In. If the person with Alzheimer’s lives in a care facility, consider joining in any facility-planned activities.

Don’t overdo it. Sticking to the person’s normal routine will help keep the day from becoming disruptive or confusing. Depending on the person’s stamina, plan time for breaks so the person can rest in a quiet area away from noise and crowds.

Adapt Gift Giving. Encourage safe and useful gifts for the person with Alzheimer’s. Diminishing capacity may make some gifts unusable or even dangerous to a person with dementia. If someone asks for gift ideas, suggest items the person with dementia needs or can easily enjoy. Ideas include: an identification bracelet, comfortable clothing, favorite foods and photo albums.

Educate yourself/find support. Learn more about Alzheimer’s in the Alzheimer’s and Dementia Caregiver Center at alz.org/care. There you can also find more tips on supporting a family member with Alzheimer’s, join the ALZConnected online community, and find more information about your local Alzheimer’s Association chapter services and programs.

​For more information on guidance and support call our 24/7 Helpline: 1.800.272.3900

Alzheimer’s Disease Research and Awareness Symposium

Register today for this free, state-wide event in Orlando. This two-day symposium will feature innovative research from across Florida by the Ed & Ethel Moore Alzheimer’s Disease Research Grant Program as well as seminars with dementia experts on the most current information and resources pertaining to Alzheimer’s disease prevention, care, and planning. 14945d3b3aa506c1a6a1e084a1b78520-rimg-w1800-h3810-gmir

Visit HERE to register for this dynamic event.

Additionally facilities, centers, community and faith-based organizations can also apply to provide travel assistance for caregivers and their loved ones to attend the Alzheimer’s Disease Research and Awareness Symposium on June 7-8, 2018 at the Florida Hospital Creation Conference Center in Orlando, FL.  Organizations may request up to $2,000 total to support the travel of their selected attendees. All applications must submit a one-page Letter of Intent by May 3, 2018 to Research@flhealth.gov.

You can find that application here:

FDOH Alzheimer’s Disease Symposium Travel Assistance Application

 

Art Donovan’s “ALZ on the AT”

Inspired by my mother, Theresa, and by her strength and the wonderful person that she is, even as she battles Alzheimer’s disease, I am hiking the entire 2190 miles of the Appalachian Trail (AT).

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Art Donovan begins his own Walk to End Alzheimer’s.

In 1968, while on a family vacation in Baxter State Park, Maine, my mother made an off-hand comment that she’d like to walk the Appalachian Trail (AT) someday. A sign describing this iconic footpath from Maine to Georgia is what prompted this comment. I don’t remember much more about that part of the trail, and mom never did hike the AT, but that comment has stuck with me for 50 years.

Inspired by my mother, Theresa, and by her strength and the wonderful person that she is, even as she battles Alzheimer’s disease, I am hiking the entire 2190 miles of the AT. I stepped off onto the trail February 28, 2018 in my own Walk to End Alzheimer’s. As anyone who knows or has known someone with this disease can attest to, Alzheimer’s not only affects the individual, but also has a tremendous impact on their family, friends, caregivers, and others. Although Alzheimer’s has ensured that mom can no longer join me in this endeavor, she has a map of the AT on her wall and family keep her updated on my progress. I hope that visiting her will be my final destination on this adventure.

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Art, his mother, and siblings (2011).

My goals, along with those of my supportive wife and family, are two-fold. First, of course, is the completion of the entire AT, from Georgia to Maine. The second, and I feel is the most important goal, is to raise awareness of and funding for more research and education into this devastating disease. My generation, the ‘boomers’, have now entered into the high-risk age for Alzheimer’s disease. It is time to discover the causes, develop effective management strategies, and to eventually find a cure, now!

I have met so many wonderful and interesting people on this journey so far and everyone has their own reason for the hike. If we have the chance, I tell them about my reason and hope that one step at a time, I can make a difference.

Beautiful view from Janes Bald

I have the goal to hike all 2190 miles of the AT, but I have not even contemplated a fundraising goal. To date I have walked over 400 miles since I started and raised over $3600 for the Alzheimer’s Association. I am amazed and truly humbled by the generosity of the people that have supported my goal of raising funds for this disease. I am asking for donations of at least a penny per mile of the AT (that’s just $21.90). It’s not much, but if lots of people join in, we can make a huge difference.

Come walk with me, physically or virtually, by visiting the Facebook page Art Donovan on the Appalachian Trail or through our tribute page on the Alzheimer’s Association website: act.alz.org/goto/ALZontheAT. We welcome and appreciate your support. If you would like to hike a part of the AT with me, please send me a message through the Facebook page and we will try to arrange it.

Thank you!

Art Donovan, aka ‘CraftE’

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Five Tips for Breaking Down Alzheimer’s Stigma

Alzheimer’s disease is the only top ten cause of death that does not have any sort of treatment to slow the progression of the disease. Many individuals living with Alzheimer’s disease face discrimination due to stigma. This stigma can prevent many individuals from obtaining information about the risks of the disease or participating in clinical trials.

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A survey focusing on stigma was recently published in Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association. The survey features the responses of 317 individuals based on their thoughts of a description of a man with mild-stage Alzheimer’s disease.

The results show that 73.8% of respondents think that the individual would not be able to remember recent events. 63.4% think that the individual would face employment discrimination. 55.3% think that the individual would be excluded from medical decision-making. While Alzheimer’s affects everyone differently, these are generally symptoms of the later stages of the disease not mild-stage.

There are several large clinical trials that are working towards finding potential therapies by 2025. It is important to reduce stigma associated with Alzheimer’s disease in order for individuals to be willing to participate in these trials.

“The unfortunate stigma associated with Alzheimer’s may prevent people from getting the diagnosis they need or the opportunity for early intervention that could improve their quality of life. We need to reduce the stigma to encourage persons with mild or even no symptoms of Alzheimer’s disease to enroll in prevention trials to find effective treatments. These survey findings could also have implications on the national goal of developing an effective therapy by 2025,” says Maria C. Carrillo, Ph.D., Chief Science Officer, Alzheimer’s Association.

The following tips can help to overcome Alzheimer’s stigma. A29Q4675

    1. Be open and direct.
      Engage others in discussions about Alzheimer’s disease and the need for prevention, better treatment and an eventual cure. If you are living with Alzheimer’s, engage with others like you on our message boards.
    2. Communicate the facts.
      Sharing accurate information is key to dispelling misconceptions about the disease. Whether a pamphlet or link to online content, offer information to help people better understand Alzheimer’s disease. Learn the facts about Alzheimer’s and find an education program near you.
    3. Seek support and stay connected.
      It is important that we stay engaged in meaningful relationships and activities with family and friends. Caregivers or those in the early stages should consider joining a support group. Building a strong network is critical.
      Contact your local chapter about an early-stage support group near you.
    4. Don’t be discouraged.If people think that Alzheimer’s disease is normal aging, see it as an education opportunity. Denial of the disease by others is not a true reflection of those living with the disease. Tips for helping family and friends.
    5. Be a part of the solution.
      As a member of your community, use your voice to help raise awareness, end stigma and advocate for more Alzheimer’s support and research.
      Learn how you can take action in the fight against Alzheimer’s.

If you have any questions, call the 24/7 helpline at 1-800-272-3900.

Learn more about the Central and North Florida Chapter of the Alzheimer’s Association:

As Alzheimer’s Disease Prevalence and Cost of Care Rises, State Respite Funding Does Not Keep Up with Demand

As Alzheimer’s Disease Prevalence and Cost of Care Rises, State Respite Funding Does Not Keep Up with Demand

  • Florida’s new legislative budget fails to serve growing needs of families facing Alzheimer’s disease.
  • New Alzheimer’s Association report reveals sharp increases in Alzheimer’s prevalence and cost of care in Florida.
  • Florida rose from 520,000 people in our state living with Alzheimer’s to just over 540,000 in one year.
  • In the next seven years, an increase of new cases of the disease is projected to grow 33.3% in Florida according to the new Alzheimer’s Association 2018 Alzheimer’s Disease Facts and Figures report.
  • Less than a third of the recommended funding for respite care was approved this year leaving little to assist in critical care for Floridians living with Alzheimer’s disease and their families.
  • Community Care for the Elderly and the Alzheimer’s Disease Initiative (both with waiting lists to provide care services to Floridians in desperate need) received less-than-modest increases this year; inadequate to serve the growing needs of Florida families facing Alzheimer’s.
  • Thousands are on the waiting lists for other state respite care programs, but the funding provided for this year was not enough to make a significant impact on the size of these lists.
  • This is a missed opportunity in Florida that couldn’t come at a worse time for individuals living with Alzheimer’s and their families given the emotional, financial and physical burden of this disease.

“ Respite care for me and my family, while caring for my sister with early onset Alzheimer’s, was like winning the lottery. When we could afford it we had someone come in 2 hours a week to bathe my sister, but that two hours was a gift. It may not seem like much but to have the ability to walk away from caregiving even for a short period of time can make all the difference in the world. It can help re-energize the caregiver and keep them healthy. At one point we were gifted some respite hours from our local Adult Day Care facility and that helped allow us to do some “normal” things like go to Target or grocery shopping. It may not seem like much but small things like that can make a huge difference,” says caregiver and Floridian Laura Oldt.

  • In Florida, more than 1.1 million​ caregivers provided a total of 1.27 billion​ hours of unpaid care last year. This care is valued at a total of $16.13 billion. The estimated lifetime cost of care for an individual living with dementia is $341,840.
  • The long duration of illness before death contributes significantly to the cost of care and public health impact of Alzheimer’s disease with those is the last stages in a state of disability and dependence.
  • Caregivers themselves face a higher health care cost of $793 million more than non-caregivers. Emerging research suggests that the physical and mental stress of providing dementia care increases caregivers’ susceptibility to disease, depression and other health complications.
  • Providing respite care is vital, giving caregivers a chance to look after their own health and take care of other family responsibilities.

“Caregiving for someone with Alzheimer’s is a lonely existence. It is 24/7 of caring for someone with no relief in site. Respite care is critical to the survivor of the caregiver both emotionally and physically. Imagine being with an adult, someone you know and love, deteriorating in front of your eyes day in and day out. Having to feed them, change their diapers, wash their hands, bath them, dress them and more, knowing you need to do this every day with no help. It can seem like an insurmountable existence when all you want to do with your loved one is just be able to spend some quality time with them not be their nurse. Caregiving for someone with Alzheimer’s is  both emotionally and physically crushing. Respite care, even in small amounts, can be that light at the end of the tunnel,” says caregiver Laura Oldt.

  • Given the high costs of care services, few individuals with Alzheimer’s have sufficient long-term care insurance or can afford to pay out of pocket for long-term care services for as long as the services are needed.

“One small way we can ease the burden for families facing Alzheimer’s in Florida is through respite care – given the enormous financial and physical burden caregiving is for loved ones with Alzheimer’s disease – state funded respite care services provide families with brief opportunities to take vital time to care for themselves and other important family responsibilities,” explains Michelle Branham, Vice President of Public Policy and Communications for the Alzheimer’s Association in the state of Florida. “As a result of this particular funding decision, may of these Florida families will be left to fend for themselves without any support.”

  • Strategic planning on a state level is needed to protect individual family finances from being depleted and assist this vulnerable population and their families in meeting the care needs of individuals living with Alzheimer’s disease.

Family care support