By Kara Seibel RN BSHP
As baby boomers age through their 60’s, 70’s and 80’s and beyond (the age range of greatest risk of Alzheimer’s disease and related dementias) the number of people aged 65 and older is estimated to grow from 58 million in 2021 to 88 million in 2050. As our older population grows so will the proportion of Americans with Alzheimer’s and other dementias as well as the need for caregivers.
Dementia is a brain disease characterized by loss of memory, speech, reasoning, and other cognitive functions; ranging from mild cognitive impairment (MCI) to Alzheimer’s Disease (AD), the latter is the most common form of dementia accounting for 70 percent of all cases. According to the NIH an estimated 6.5 million Americans 65 and older are living with Alzheimer’s dementia today and this number could grow to 13.8 million by 2060. Scientists continue researching the complex brain changes that are involved in AD. These changes damage the brain starting a decade before memory and other cognitive problems are noticed. While degenerative brain disease and dementia are on the rise across all fifty states, in Florida the older population is above the national average, 1 in 5 residents are 65 and older. According to AARP in Florida there will be an Alzheimer’s increase of 38.5 percent between 2017 – 2025. As these numbers escalate the financial burden on individuals, caregivers, and our healthcare system increase.
In Florida, a new bill was passed SB 806 that will require the Florida Department of Health to improve education and community outreach programs related to Alzheimer’s and dementia related disorders. According to Alzheimer’s Association this is a critical issue in Florida where there are more than 580,000 people living with the disease and that number is projected to increase to 720,000 by 2025. The bill will increase awareness information availability to health care practitioners with the goal of early detection and timely diagnosis of cognitive impairment through assessment tools. The bill also addresses continuing care through the Medicare Annual Wellness Visit for cognitive health as well as understanding lifestyle interventions to reduce cognitive decline. Health practitioners are encouraged to discuss the warning signs of Alzheimer’s disease and related dementia with patients over the age of sixty.
Primary care health practitioners are the first point of contact when someone is concerned about a health issue for themselves or a loved one. Geriatricians are primary care physicians who have specialized training in diseases and conditions common among older adults including dementias. Early diagnosis is a critical step in providing the best quality of life for someone with AD or related dementia. How is Alzheimer’s Disease diagnosed? Early diagnosis also allows a person to benefit from treatments sooner that may improve symptoms and help maintain a level of independence longer. It also allows more time for a person to plan for the future and to participate in decisions about their care, living options, financial and legal matters. It is important to develop a relationship with doctors and care partners to benefit from supportive services, making it easier for the person living with dementia and their family to manage the disease. Planning and having important conversations early on, it is easier to discuss matters when they are in the future, instead of in the middle of a crisis. If you are making suggestions for change for your loved one (driving concerns, safety at home) spend some time with them gathering specific information about your concerns before beginning a conversation. Then researching options for support and care that you can share with your loved one and offer alternative options. Approach them with love, concern, and support; remember you are all on the same team with common goals, the best quality of life and independence for as long as possible. Often these important conversations are difficult, including a certain family member whom they listen to, or a respected advisor such as a doctor, faith or community leader or friend may be helpful. You may even consider a third-party case manager, counselor, or eldercare mediator to help facilitate the conversation.
“Studies consistently show that proactive management of AD and other dementias can improve quality of life of affected individuals and their families,” according to Alzheimer’s Associations facts and figures 2022. “In 2021 it is estimated that family and friends provided more than 16 billion hours or $271 billion in unpaid care to people living with AD and other related dementias. This number represents an average of 27.1 hours per caregiver per week, or 1,413 hours of care per caregiver per year.” The amount of time required for caregiving increases as dementia progresses; one study showed that “people living with dementia required 151 hours of caregiving per month at the onset of dementia and increased to 283 hours per month eight years later.”
Among caregivers of spouses living with dementia who are at the end of life, close to half provide care without the help of other family or friends. Caregiver demographic in the United States claim two-thirds of dementia caregivers are women, 30% are sixty-five or older and over half of caregivers are providing care to a parent or in-law with dementia.
Caregiving tasks provided to people living with AD or other dementias is wide ranging and, in some instances, all encompassing, according to the National Alliance for Caregiving along with the Alzheimer’s Association. They include getting in and out of chairs or beds, bathing, or showering, getting dressed, feeding and toileting or incontinence care. Caring for a person living with AD or another dementia pose special challenges that may impact health and economics. As the disease progresses to moderate to severe stages the person living with dementia will experience greater losses in judgement, orientation, and the ability to communicate effectively. As the person living with dementia’s symptoms worsen, caregivers may experience increased emotional stress and depression; new or exacerbated health problems and depleted income and finances due to disruptions in employment and/or paying for health care expenses. The prevalence of depression is higher (up to 40%) among dementia caregivers than non-dementia caregivers. Many caregivers are so busy caring for their loved-one that they ignore their own health and wellness. It is vitally important for caregivers to seek support early on, creating a care team and asking for help, this journey requires a team approach. The demands of caregiving may intensify as people living with dementia approach end of life. According to AD Facts and Figures, “In the last 12 months of life, people living with dementia relied on more hours of family care (64.5 hours per week) than people with cancer (39.3 hours per week). In addition, caregivers living with a family member with dementia pay for 64% of total care costs incurred during their family members’ last seven years of life.”
Where people living with dementia live and how they receive care is dependent on their ability to pay. People with higher incomes are more likely to live in residential or memory care centers, in which the median cost was $49,000 in 2019 and is not covered by Medicare. People with lower incomes are more likely to live at home with family, depending on the state you live in, Medicaid (if you qualify) may pay a portion of nursing home expenses which is approximately $90,000 per year, according to Population Reference Bureau. https://www.prb.org/resources/the-demography-of-dementia-and-dementia-caregiving/
The Alzheimer’s Association has undertaken several efforts to improve how dementia care is studied and delivered. Its recent dementia care practice recommends placing the person living with dementia and their caregivers at the center of how care should be delivered, known as Person-Centered Care Delivery. This model focuses on the individual’s unique needs, personal experiences and strengths, instead of loss of abilities. The Person-Centered Care Model not only respects the individual living with dementia but allows for adaptability, and possibilities of maintenance or even improvement of skills and abilities while focusing on health and wellness. A core element of this Care Model is ensuring that every interaction is an opportunity for meaningful engagement, which in turn creates a better quality of life for the person living with dementia.
Join AARP and the Alzheimer’s Association in Florida as they team up to spread awareness about the needs of caregivers of those living with Alzheimer’s
Come walk with us to end Alzheimer’s https://act.alz.org/site/TR/Walk2022/FL-CentralandNorthFlorida?pg=entry&fr_id=15465