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


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