The Uphill Battle of Alzheimer’s Disease in Our Community
Alzheimer’s is the most common form of dementia, a general term for memory loss and other intellectual abilities serious enough to interfere with daily life. Alzheimer’s disease accounts for 60 to 80 percent of dementia cases, and up to 5 percent of people with the disease have early onset Alzheimer’s (also known as younger-onset), which often appears when someone is in their 40s or 50s. While great strides are being made in helping to bring proper care to patients, support to caregivers, procuring funds for research, and drafting legislation to bring these issues to the forefront – there is so much more to be done.
Fortunately, JFCS remains a constant advocate and service provider for patients and caregivers, and is acutely aware of the challenges faced. The majority of JFCS social workers, nurses, and front line staff in the Senior Services Department are Certified Dementia Practitioners, completing a course to further educate and ensure that agency staffers are as informed as possible, to properly support and assist clients.
Rebecca Rosenau, JFCS Associate Director of Senior Services says, “Sadly, concerns remain as to how to support caregivers in general, from the emotional to the financial burdens that are placed on them, namely when caring for a loved one when the process can go on for years, even more than a decade. Numerous conversations have taken place as to how mental health providers and medical doctors can and should support the individuals inflicted with the diagnosis. Too many are sent to mental hospitals, only leading to overdosing on medication, and not really treating the behaviors and the individual.”
Certain insurances will cover individual counseling support to address the challenges and offer coping mechanisms and strategies to assist those in their unique caregiving role(s). JFCS offers an ongoing monthly support group in collaboration with Arden Courts of Cherry Hill, for caregivers of those with any form of dementia; this group is unique in that respite is provided free of charge for the loved one to attend an activity during the caregiver group session. The JFCS Senior Services Department works closely with other community organizations, including, but not limited to, the Alzheimer’s Association and area adult medical day centers, to make others aware of what resources and support services exist so that JFCS can better connect clients and people in need to services in our geographical footprint. JFCS will also possibly be adding another group at the JFCS Springdale Road location.
As the Alzheimer’s Association’s International Conference stated strongly this year, “You’ve been hearing the warnings for years and they’re dire. Without an effective treatment or cure, Alzheimer’s will become so pervasive it will overwhelm the health care system and wreak havoc on the economy. Left unchecked, the footprint of the disease will only expand as the boomers age. At this week’s Alzheimer’s Association International Conference in Washington, D.C., a report put it bluntly: more than 28 million boomers will develop Alzheimer’s by mid-century and the cost of caring for them will eat up a quarter of all Medicare spending in 2040.”
While certain forms of support fall under the catch phrase of ‘case management’, and insurance will not cover the assistance for things such as resource finding, assistance with paying bills, JFCS works on a sliding scale fee to offer in-home and support services without putting any extra financial burden on the clients themselves. According to a recent survey by AgingCare.com, 25 percent of Alzheimer’s caregivers spend over $4,000 each month – $50,000 a year caring for a loved one. This is the anticipated average cost if you are able to keep your loved one at home, however, this number doubles if you are in need of an assisted living placement, and triples if you must seek nursing home placement.
Legislative bills are also recently beginning to address the voids that are apparent when it comes to Alzheimer’s diagnosis and proper treatment. One bill would ensure that doctors know they can list Alzheimer’s as a secondary cause of death. The goal of another is to make certain that new home health aides receive Alzheimer’s-specific training. A third measure would require hospitals to prominently note on patients’ records that they have the disease, so that they are treated appropriately by staff. While Alzheimer’s is known to be in the six leading causes of death, there is currently no official diagnosis, treatment, nor confirmation until the time of death, if one opts to do a brain autopsy at that time.
While these types of legislation are solid steps in the right direction, there remains much more that is needed from government, and the current bills have been a long time coming. Often legislation may be delayed due to lack of awareness, as often not until someone is personally effected by a disease or diagnosis that it becomes an issue that any one legislator or politician will feel passionate about. As the numbers of those impacted by Alzheimer’s are sadly continuing to grow, awareness is subsequently only now growing – both in the community and in government.
As Allen*, a JFCS Family Caregiver Group participant who recently lost his spouse to Alzheimer’s Disease, says, “I was grieving the loss of a spouse when she was physically still present. Psychologically, I have moments when my grief wells up. I am also appreciative of all those that in ways large and small helped me both mentally and/or physically get through this ordeal. It was comforting to both of us that I was able to keep her at home during her final days with the comfort and dignity she wanted and she deserved.”
Another caregiver used a quote from George Eliot that he said, sums it all up. “What greater thing is there for two human souls, then to feel that they are joined for life-to strengthen each other in all labor, to rest on each other in all sorrow, to minister to each other in all pain, to be one with each other in silent unspeakable memories at the moment of the last parting?”
JFCS offers counseling, social services, homecare, in-home medical support, and the above- mentioned support groups for families dealing with Alzheimer’s and dementia. We will continue to keep abreast of the current research, laws, and best practices for creating supports, treatment and services for our community. For all of the voices of those affected, and the many more to come during the years ahead who will need to share their pain and their journey with JFCS, we will be here. Living with Alzheimer’s can seem like a roller coaster of emotions, and a constant uphill battle, but JFCS is honored to help lighten the load for all, and to make sure that no person needs to take one step alone during the climb.
For more information regarding the comprehensive list of JFCS Alzheimer’s and dementia services for both caregivers and patients, please call Rebecca Rosenau, Associate Director of Senior Services, at 856-424-1333, Ext 1702, or email firstname.lastname@example.org.