We reported Monday on the challenges that the National Alzheimer's Plan faces.
Comments regarding the plan are due February 8. CCAL, of which I am on the board will be submitting comments. More are weighing in.
The Assisted Living Federation of America were were dismayed to see the lack of acknowledgement of the role assisted living has in caring for individuals with Alzheimer's disease. They noted that the population of assisted living residents with Alzheimer's and related diseases is rapidly increasing. According to the 2009 Overview of Assisted Living (research conducted and analyzed by Acclaro Growth Partners), more than 1/3 of all of the residents residing in assisted living communities have a diagnosis of Alzheimer's or a related dementia.
They further cited a survey of the top 80 senior living providers by Senior Living Executive in 2011 confirming that 17% of the total residents served by these top providers are residents living in special memory care accommodations.
"I am sure you can understand my concern that assisted living was not included in any of the goals or strategies that referenced care setting for individuals with Alzheimer's disease. Assisted living has been and will continue to be an option that can provide not only the most appropriate setting for individuals with this disease but a cost effective option as well." It went on to cite specific recommendations.
I was dismayed a bit by what I perceived to be a lack of emphasis when it came to the family caregiver. Here is the section I question.
Strategy 3.B: Enable Family Caregivers to Continue to Provide Care While Maintaining Their Own Health and Well-BeingEven though informal caregivers usually prefer to provide care to their loved ones in their home or other community settings, eventually the round-the-clock care needs of the person with Alzheimer's disease often necessitate nursing home placement. While they are providing care, supports for families and caregivers can help lessen feelings of depression and burden and help delay nursing home placement. Examples of actions to further support informal caregivers are identifying their unmet support needs; developing, disseminating and expanding interventions; and highlighting supports during crisis situations.
It almost sounds dismissive. Are they suggesting by using the word "prefer" that the proper setting for the Alzheimer's patient is not at home? And while it recognizes that support for the caregiver is needed when they are caring for a loved one at home, it does not seem to recognize that care for the caregiver does not stop there. Just because someone with Alzheimer's moves to a more acute assisted or nursing setting does not mean that the burden for the caregiver lessens. In fact it increases. Diligent caregivers are the reasons why some residents do well while those without advocates sometimes don't.
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