Alzheimer's blog

Plan needs to embrace Alzheimer's quality of life issues

By Angela Lunde June 11, 2013

In January 2011, President Obama signed into law the National Alzheimer's Project, or NAPA.

The plan set goals aimed at accelerating research, improving early diagnosis and coordinating care and treatment of the disease. Dr. Richard Hodes, director of the National Institute of Aging, recently presented a set of research milestones that will use be used to track progress toward NAPA's goals. The milestones will be part of an update that should be published later this month, so stay tuned.

There's no cure for Alzheimer's, Lewy body disease or other related dementias, but there are treatments. When we think of treatment, most of us probably imagine a pill. While there are drugs approved for Alzheimer's, they don't cure or stop the disease from progressing. At best, they may temporarily slow the worsening of symptoms for some.

We all applaud the efforts of NAPA and its primary focus toward better drug treatments. At the same time, any promising drug won't be available for persons already living with cognitive decline and may not be available in time for those who develop the disease in the next decade, or even two.

Future drug therapies may hold promise to further delay the onset of dementia and improve symptom management, but we can't be sure they will ever cure or eliminate the disease entirely.

There's another type of treatment available — non-pharmacological therapies, or personalized practices, or psychosocial approaches. Unlike drug treatments, these treatments have no side effects, cost little and have the potential to significantly enhance life and overall well-being for those living with the disease, as well as their caregivers.

We have a substantial amount of evidence-based data demonstrating that these non-pharmacological therapies (personalized approaches as I prefer to call them) reduce symptoms, positively impact behavioral and health outcomes, improve the day to day lives of people living with dementia and their support partners, delay institutionalization, can slow the rate of symptom progression, enhance preserved strengths and reduce the need for medication.

Non-pharmacological therapies include cognitive based interventions such as cognitive training and stimulation, psychosocial therapies such as reminiscence and social engagement, movement and exercise programs, sensory therapies such as music and aromatherapy, as well as appropriately designed environments. Person-centered training and programs that support family and caregivers are other examples.

Each approach represents a significant contribution to Alzheimer's treatment. Many of my friends and colleagues are working tirelessly to draw attention to these therapies and at the same time expand research to support their efficacy; ultimately making them more widely accepted, available and integrated into our communities.

With a disease that's here to stay for some time, our national efforts must ignite attention on improving the quality of life for those living with the disease and their families. This means a coordinated strategy that values, supports and encourages non-drug approaches and subsequent research with the same devotion as drug research.

At the end of the day, it's unlikely one drug or one therapy will be the magic bullet, but a combination of the right drug with the right personalized approaches. However, the most significant milestone in my mind will be one in which the stigma and fear surrounding dementia dissolve and our nation embraces the dignity and worth of every individual living with dementia. We'll see what the NAPA update has to say.

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June 11, 2013