Resources for Family Caregivers of Older Adults
Alzheimer’s Disease Progress Report 2014 – Meaning for Family Caregivers

Alzheimer’s Disease Progress Report 2014 – Meaning for Family Caregivers

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Alzheimer’s Disease touches many of us as it attacks our family or friends. Until a cure is found, its impact will only grow as the population ages.

Every year it seems we have a new report that gives us all more information about Alzheimer’s and updates on the progress of research. This year is no exception! We have been reviewing, digesting and trying to sum up the report to see what insights might be of interest to our family caregivers.

Most of us who are dealing with Alzheimer’s disease in our family members and friends have heard there has been more funding from the government earmarked for Alzheimer’s research. This is a welcome sign for many who are searching for a cure but also just some promise of help to get them through the day.

At this point in time, there is no treatment to slow down or stop the disease and a cure, unfortunately, seems far off.

We try to bring you some of the more promising news of research advances that could help. It seems that our best efforts right now can be focused on doing the things that could help us prevent or at least stall the development of Alzheimer’s disease. Lifestyle changes can be problematic but for those who know, caring for someone with Alzheimer’s disease is much more difficult.

Let’s see what might be on the horizon for family caregivers and their senior loved ones.

Alzheimer’s Progress Report Highlights

The National Institute on Aging (part of the NIH) Alzheimer’s Disease Progress Report begins with this statement about Alzheimer’s:

Alzheimer’s disease is an irreversible, progressive, age-related brain disorder that affects as many as 5 million Americans age 65 and older, in addition to their families.

Despite the usual estimate that Alzheimer’s is the sixth leading cause of death, the report states that for older adults Alzheimer’s only follows heart disease and cancer in death rate. It is felt that many Alzheimer’s deaths are under-reported because it is not listed as the cause of death on death certificates of older adults. The report discusses this phenomenon because it is imperative to be able to accurately document prevalence of the disease to be able to understand likely future trends.

As part of the National Plan to Address Alzheimer’s, the National Institutes of Health (NIH) has funded research to find ways to treat and cure Alzheimer’s disease.

Addressing Alzheimer’s

This particular report will present how the NIH is meeting the challenge presented by the National Plan.

  1. Collaboration internationally between researchers is a move forward for Alzheimer’s research. Sharing data and genetic findings internationally will help improve the discoveries.
  2. NIH partnering with pharmaceutical companies to speed up the process of drug therapies that can work to bring treatment hope to those with Alzheimer’s. It should not only speed the process but bring effective drugs to market that are affordable.
  3. The Medicine Partnership will also be able to examine drugs currently used for other diseases that could be effective against Alzheimer’s.
  4. Development of a worldwide, public database known as the International Alzheimer’s Disease Research Portfolio that will track Alzheimer’s disease research, organizations with funding and funding availability to avoid duplication, leverage resources and monitor growth.
  5. Development of strategies to care for caregivers thereby improving their lives as well as the person with dementia.
  6. Under the Affordable Care Act, the annual Medicare wellness visit now includes a mandate for detection of any cognitive impairment with referrals for further testing as needed.
  7. NIH is funding research focused on technologies that will help older people live independently at home as long as possible. This includes but is not limited to sensors, remote health monitoring, and functional status changes that might signal need for more care.
  8. The NIA is assisting physicians with tools for early diagnosis and treatment options, recruiting participants in clinical trials to help find answers as well as to improve lifestyle factors, and convene international summits to strategize where future efforts are needed.

Alzheimer’s & Family Caregivers

A component of the National Plan to Address Alzheimer’s includes how family caregivers can be supported.

The National Institute of Aging (NIA) supported analysis determined the cost of caring for people older than age 70 with dementia in the United States was between $159 billion and $215 billion in 2010.

Family caregivers have more invested due to unpaid caregiving, lost wages, out of pocket health expenses, travel, and other unforeseen costs.

Family members providing in-home and long distance care to persons with dementia are prone to isolation, depression, financial strain, physical strain especially at a time when they themselves are aging and facing their own aging issues.

Emotional Burden for Family Caregivers

One study specifically investigated the emotional burden those caring for people with dementia face due to the unique characteristics of those suffering with advanced dementia. Those include disruptive behaviors from the person with dementia and the feelings of being trapped in caregiving as the demands increase with the disease progression.

Therefore, it will be very important for researchers to focus their attention on how to reduce or control behaviors in persons with dementia so that the caregivers will be better able to manage and remain free from depression symptoms.

Researchers are now studying whether adult day programs for people with dementia can provide the necessary relief from caregiving stress. A few hours of respite from day-to-day caregiving duties was found to be helpful. They found a reduction in anger and frustration felt by caregivers.

They also found that the health of caregivers improved when sending their loved one to day care gave them some respite.

The NIH has funded and continues to expand resources for caregivers including the following:

  • ADEAR – Alzheimer’s Disease Education and Referral Network, government resource for information about Alzheimer’s disease and issues related to caregivers. The latest information about clinical trials is available here as well. Contact them at www.nia.nih.gov/alzheimers
  • ADEAR’s Toll free number is manned with information specialists at 1-800-438-4380 who can answer questions for caregivers and provide referrals to appropriate sources.
  • Caregiving resources are available through ADEAR including tip sheets and ebooks

Learning Much About Alzheimer’s Through Research

We are learning more each day about the characteristics of Alzheimer’s disease and other dementias through ongoing research. We know that brain changes with aging are natural but the loss of neurons, the diminished function of neurons and the damage that disrupts brain function is not normal.

Hopefully research will soon catch up to the damage and find ways to prevent, treat and cure Alzheimer’s and dementia.

Scientists and national organizations such as the NIH and NIA are working to put caregivers at the forefront of these endeavors realizing that caregivers’ needs must be included in the effort.

Caregivers are vital to fulfilling the health and safety needs of those people with Alzheimer’s disease and other dementias. As the numbers of those diagnosed continue to rise, the demand for answers heightens.

We will keep you posted on new research and innovations to help you provide the best care for your senior loved one.

We'd love to hear your thoughts!





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