Two years ago, in fulfillment of the National Alzheimer’s Project Act, the first installment of the National Plan to Address Alzheimer’s Disease was released. Unprecedented in scope and ambition, the plan seeks to provide support and hope for the more than five million Americans suffering from dementia. But authors note that this is “not a federal plan. It will require the active engagement of public and private sector stakeholders to achieve.” Those stakeholders can, and should, include Assisted Living providers.
The Need for a National Plan
In the introduction to the National Plan to Address Alzheimer’s Disease, President Obama writes, “Alzheimer’s disease burdens an increasing number of our Nation’s elders and their families, and it is essential that we confront the challenge it poses to our public health.”
Indeed, according to the plan, “the prevalence of those with AD [which referrs to Alzheimer’s disease as well as other dementias such as frontotemporal, Lewy body, and vascular dementia] doubles for every five-year interval beyond age 65.” As the number of those 65 and older is expected to increase to more than 72 million by 2030 and the number of those over 85 will grow to more than eight million, this “suggests a substantial increase in the number of people with AD.”
In addition, the plan notes that “stigma and misconceptions associated with AD are widespread and profoundly impact the care provided to and the isolation felt by people with AD and their families.” Both those with dementia and their family members need support and resources to help provide appropriate care. Finally, while great strides have been made in research into Alzheimer’s and other dementias, the plan points out, “there are no pharmacological or other interventions to definitively prevent, treat, or cure the disease.”
Goals and Strategies of the Plan
Created in order to address these challenges and prepare for the growing population of those with dementia, the initial National Plan outlines five goals and allocates a significant investment—$156 million in 2012 with a $122 million increase in 2013—in order to fulfill those goals.
The first goal, in response to the lack of a cure, is to prevent and treat the disease. The plan suggests strategies in order to achieve that goal, including promoting clinical trials of medical and non-medical treatments and furthering research into early diagnosis. In addition, the plan seeks to take what has been learned through these various studies and put it into practice.
The second goal is to promote high-quality care for those with Alzheimer’s and other dementias. The plan suggests that this should be done through workforce training as well as the promotion of coordinated care and safe transitions between care settings. In addition, the plan suggests a focus on minority groups who are disproportionately affected by dementia in this area to ensure that they receive high-quality care as well. These include certain ethnic groups, those with Downs Syndrome, and those with early onset dementia.
The third goal is to increase support for those with dementia and their family members. To achieve this goal, the plan recommends training and support networks for family caregivers, the encouragement of advance planning, and help with housing for low-income individuals. In addition, the plan recommends increased attention to incidences of elder abuse and the rights of those with dementia.
The final two goals are to increase public awareness of dementia and to gather and track data. According to the plan, the fourth goal will be met with increased educational efforts and collaboration with states and other entities. The fifth goal will be met by setting up a data collection system to track dementia stats and by continuing to update the progress on the plan itself.
Progress to Date
So far, two updates to the National Plan have been released in 2013 and 2014. According to these updates, much has already been done, yet further efforts have been identified as necessary to addressing the challenges. For instance, the 2014 update reports that in the promotion of high-quality care, training programs were provided to over 34,000 physicians and other health care providers. However, it was noted that these efforts should be extended to direct care workers and family caregivers. In addition, the 2013 update suggested that a primary care curriculum on Alzheimer’s disease should be created for future training purposes. This has yet to be completed.
Great strides were made in public outreach since the plan was first published in 2012. For instance, three websites were created to disseminate tools and information: alzheimers.gov, longtermcare.gov, and eldercare.gov. In addition, the Centers for Disease Control and Prevention collaborated with the Alzheimer’s Association on the creation of The Healthy Brain Initiative for state and local public health agencies. This initiative is described by the plan as “a series of Road Maps to advance cognitive health as a vital, integral component of public health.”
In addition, support for family caregivers increased with the release of new caregiver assessment measures and interventions for home support, as well as a webinar on government tools and resources. Continuing this support, the 2014 update called for additional initiatives, including developing technological tools to help family caregivers and training them in disaster preparedness strategies.
The updates also report that set of tools was developed for the assessment of cognitive impairment. Initially, the 2013 update reported that the tools were meant to be integrated into Medicare’s annual wellness visit, but according to the 2014 update, these assessment tools—about 116 in total—can also be administered by family caregivers or even self-administered. These tools are accessible through an online database found on the National Institute on Aging’s website.
Investigation into the needs of minority groups led to the addition of new recommendations in the 2013 update. In particular, the Native American population was identified as needing increased support, and drug use recommendations for those with early onset dementia are forthcoming. Finally, it was recommended that a panel on advanced dementia issues be convened in order to further understand and address the particular needs of this group.
There was also increased focus on preventing elder abuse of those with dementia in the 2013 update. Plan authors noted the need for training in this arena for employees in long-term care settings as well as for ombudsmen and fiduciaries—law enforcement officers were added to this list in the 2014 update. The 2013 update also recommended increasing public awareness of this issue, and promoting a collaboration between legal groups and groups involved in Alzheimer’s awareness.
Finally, the updates note that data on cognitive impairment across states should be collected and summarized for a more complete picture of the impact of dementia and the needs of those with the disease. According to the 2014 update, this process has begun using data gathered from the Behavioral Risk Factor Surveillance System. In addition, the updates added a focus on avoidable hospitalizations and the importance of reducing their frequency.
How Assisted Living Can Help
Assisted Living providers can help further all five goals of the National Plan, and, in fact, may be doing so already. To help with the goal of preventing and treating the disease, providers can encourage residents to participate in drug and intervention trials. They can help with the goal of increasing access to high-quality care by continuing to provide dementia care training to their employees. In order to help support family members of those with dementia, many Assisted Living communities host support groups or meetings on-site.
Providers can also help raise awareness in the general public by acting as advocates and speaking at community events—CALA’s Voice of Assisted Living outreach program includes pre-written speeches on dementia to help you do this. And finally, you can help further the goal of collecting and tracking data on dementia by tracking outcomes at your community, such as surveys of residents’ and family members’ satisfaction with the care received. CALA has developed a tool to help with this goal as well—the Acute Care Transfer Log tracks hospitalizations so that you can better communicate with health care providers how Assisted Living helps reduce readmissions.
However you choose to help further the goals of the National Plan to Address Alzheimer’s Disease, you can make it understood in your local area that dementia is a growing challenge, and that you are there to help alleviate its affects and support the individuals affected.
This article was first published in CALA News & Views Spring 2014: Mindful Memory Care.