May is Older American's Month -- service is local, but standards of care can be national. As the AoA puts it, unleash the power of age. And the federal government wants to help those who are aging. A few weeks ago after ASA ended, I posted about the inverted triangle of associations and federal websites all aiming one way or another at helping older adults. As you may know, there is a Senate Committee on Aging that includes long-term care on its issues list, and a Sub-Committee on Health and Aging that includes renewal of the Older Americans Act. There is a Center for Excellence in Assisted Living (CEAL) that promotes, understandably, improving quality in assisted living. In addition to those national entities, we have the various associations of lobbying, advocacy, and concern. These include senior housing and nursing home groups, LeadingAge, ALFA, and an association of state agencies, NASUAD (home and community services). Is there a navigator tool for consumers that helps decipher the web of entities that are trying to serve? And is there a common framework, a thread that even that connects all of these, other than the words senior, older, aging?
Local organizations offer services for those who are aging. Picture the local library. Did you know that there are 16,698 public libraries in the United States? Have you been to a library lately? During the day, they are a haven for retirees – and not just the books: offering "meeting space for community projects and educational programs, such as knitting, gardening, journaling, biking and genealogy — and book clubs on everything from mysteries to history." Picture the local senior center. Did you know that there are 11,000 of those? Among other features of senior centers, consider this award-winning program in Farmer’s Branch, TX, that "pairs teens with seniors, giving them the chance to share skills with each other. Teens have taught their older counterparts how to use personal computers, cell phones and digital cameras, while the seniors have taught teens skills in cooking, sewing, line dancing, yoga and dominoes." Is there a framework that connects libraries and senior centers, other than the words retiree, seniors?
Now consider dementia care for those who are aging. The Alzheimer’s Association is single-minded, some might say obsessed, with raising money to find the cure for Alzheimer’s. But on the way to a cure, they also admit that services might be required. Their website shines a one-page light on the elephant in the senior housing room. "Definitions of assisted living vary from state to state. Assisted living facilities may or may not offer services specifically designed for people with dementia, so it is important to ask if they have special care units for dementia care, aka memory care. Some states have legislation requiring nursing homes and assisted living residences to tell exactly what specialized services their SCU provides, including a trained staff, specialized activities, ability of staff to care for residents with behavioral needs and fees. When you visit a facility, ask for their Special Care Unit Disclosure form."
What about a common language? So, to answer the obvious, there are NO regulations of those services offered for dementia care. Executives in the industry noted in 2011 that they REALLY don’t want regulation. Perhaps they felt burned by the oversight of nursing homes. But does no regulation also have to mean, as noted by the Alzheimer's Association site, no common definition, disclosure and expectation setting? In addition to a navigational tool that spans Federal websites and agencies, the consumer needs a navigational clue about best practices that should cross state lines. And such a framework has been published -- a remarkable cross-agency, cross-discipline initiative and report, the Dementia Care Quality Chasm -- which sets a vision for what best practice, aka person-centered dementia care, looks like. How will it be implemented, can it be adopted voluntarily, given the fragmentation of descriptors and services across 50 states? Can these best practices be adopted in the absence of a multi-state shared definition of assisted living? More when there's more.