Alzheimer’s a growing public health crisis

STATE SEN. BARBARA L’ITALIEN‘s mother, Claire, lived with her and her family for 20 years near the end of her life. Claire helped raise Barbara’s four children, enabled Barbara to run her first campaign, and was a great source of support and love for the family.

When Claire was diagnosed with Alzheimer’s disease, from which she suffered during the last seven years of her life, things changed. It was now Barbara’s turn to take care of Claire. Barbara and her husband, both busy, working parents of young kids, found themselves in the challenging situation of navigating this diagnosis. They went through the difficult process of figuring out the resources and services available, determining care options for Claire, and understanding what this disease meant for Claire and their family.

Alzheimer’s is one of our worst fears for our parents and ourselves. Barbara’s story is not uncommon, and as our population ages, more and more families will share this experience. There is still no cure in sight, and while we have made progress in our understanding of this disease, a looming health crisis is upon us.

Alzheimer’s is a progressive brain disease that slowly destroys the memory and eventually all ability to function. More than 5 million Americans are currently living with Alzheimer’s disease – including 120,000 in Massachusetts – and this number is expected to triple by 2050. Nearly one in three seniors who die each year has Alzheimer’s disease or another form of dementia. With 1,688 deaths due to Alzheimer’s in Massachusetts in 2014, it is the Commonwealth’s sixth leading cause of death. Particularly alarming, most people living with Alzheimer’s have never even been diagnosed or are not aware of their diagnosis.

Alzheimer’s takes a devastating toll, not just on those with the disease but also on their families and caregivers. Nearly 60 percent of caregivers rate the emotional stress as high or very high, and about 40 percent suffer from depression.

The growing cost of caring for those with Alzheimer’s and dementia is a huge burden on our healthcare system. In 2017, the direct costs are estimated at $259 billion, with 51 percent of these costs borne by Medicare and another 17 percent borne by Medicaid. Today, nearly one in five Medicare dollars is spent on people with Alzheimer’s and dementia, and this is projected to increase to one in every three dollars by 2050. At that point in time, the total cost is expected to exceed $1 trillion annually (in 2015 dollars).

We, the chairs of the Legislature’s Public Health and Elder Affairs Committees, have a plan to protect our aging citizens and make it easier for families to navigate a diagnosis, but we need to work together. Barbara’s journey caring for Claire gave her firsthand insight into the types of difficulties families of people with dementia go through – and what needs to be done. Our priorities focus on diagnosis and education, and increasing supports and services.

Our parents and grandparents are living longer and the rate of Alzheimer’s and dementia is increasing, yet there is still an alarmingly low rate of diagnosis for Alzheimer’s disease.

Barbara filed legislation to require further physician training on Alzheimer’s and other dementias. An early diagnosis is critically important, and better training for non-specialists on how to recognize Alzheimer’s early and interact with patients who have dementia will improve the delivery of care across our healthcare system.

Just as medical professionals need help recognizing Alzheimer’s, most families do not know or understand the early warning signs or services and supports available. Barbara and state Rep. Danielle Gregoire sponsored a line item for the state budget to fund the Alzheimer’s public awareness and education campaign. This type of initiative is desperately needed to help people identify early warning signs for the disease and make families aware of support services.

To increase supports and services, the Public Health Committee, on which Sen. Jason Lewis serves as Senate Chair, favorably passed legislation last session to create the Massachusetts Alzheimer’s Project under the state’s Executive Office of Health and Human Services. This initiative would coordinate all government programs and services to ensure that all available resources are being effectively leveraged, and we are doing everything possible to improve Alzheimer’s prevention, treatment, and caregiving supports. Though this legislation did not become law last session, it will continue to be one of Jason’s top priorities during the current legislative session.

Further, because elders with dementia are at a greater risk of abuse, legislation has been filed that would strengthen training for elder services workers to better prevent and detect abuse or self-neglect.

With the leadership of Massachusetts Secretary of Elder Affairs, Alice Bonner, and advocates across the Commonwealth such as the Alzheimer’s Association, we are making progress in addressing Alzheimer’s in areas ranging from housing to transportation to public safety to caregiving. There are promising developments underway in making communities more “aging positive” and “dementia friendly” to better serve the needs of all elders, especially those suffering from Alzheimer’s and other dementias.

On Monday at 1 p.m., the chairs of the Joint Committee on Public Health, Jason and Rep. Kate Hogan, and the chairs of the Joint Committee on Elder Affairs, Barbara and Rep. Gregoire, are convening an informational hearing in Room 428 at the State House to address the preparedness of the Commonwealth for the Alzheimer’s and dementia epidemic.  Those testifying will speak to where Massachusetts stands in terms of preparedness for the increasing population of those with Alzheimer’s and dementia and what we as a state can do better. Those testifying include representatives from the administration and legislature, advocates, caregivers, medical experts, and more.

As we pull these efforts together, it is with a sense of urgency: now is the time to take action and pass a comprehensive set of legislative measures if we are to have a meaningful impact addressing Alzheimer’s disease in Massachusetts.

Sen. Jason Lewis, a Democrat from Winchester, is the Senate chair of the Joint Committee on Public Health.

Sen. Barbara L’Italien, a Democrat from Andover, is the Senate chair of the Joint Committee on Elder Affairs.