We’re not forgetting something, we’re missing something: a diagnosis.
Only 45 percent of seniors diagnosed with Alzheimer’s disease or their caregivers report being told the diagnosis by a healthcare provider. In comparison, 90 percent or more of people with cancer or cardiovascular disease are informed of their diagnosis.
But you don’t need a medical degree to see the signs—or do something about it.
Richard Elbein, CEO of the Houston and Southeast Texas chapter of the Alzheimer’s Association told attendees at the inaugural Memory Care Forum in Austin, Texas, he first learned of his aunt’s cognitive decline from her bank teller. His aunt, who lives in Pennsylvania, later received a diagnosis of Alzheimer’s disease.
A diagnosis can lead to better decision making, medical care, planning and support. It’s also the necessary first step in building dementia-capable systems to accommodate the needs of people with memory loss as well as physical, cognitive and behavioral symptoms. "The key driver for dementia-capable is [people's] needs,” Elbein says.
Dementia-capable systems means better identification of people with dementia, communication with those affected and their families, training at all levels, tailoring of services and ability to self-direct.
"It’s great to have one group of highly skilled and trained individuals, but it doesn’t remove the responsibility for including the entire rest of the workforce,” Elbein says. “There has to be education across the community and being comfortable with the limitations around dementia and engagement with dementia."
Elbein identifies seven steps for building a dementia-capable system:
1. Educate about brain health and participate in research
Know the risk factors for dementia, the 10 signs of Alzheimer’s disease and symptoms management. Consider trial matching (think of it as the eHarmony for dementia, Elbein says) where people are paired up with experimental research.
2. Identify people with possible dementia and refer for diagnosis
Train non-medical staff to identify signs of possible impairment and empower them to refer those with possible impairment for diagnosis.
3. Ensure programs and resources recognize cognitive abilities
Allocate resources properly to do the most good, recognize and respond to service preferences of people with dementia and have more and different service options available to them.
4. Ensure services are person and family-centered and culturally appropriate
Consider the different needs, abilities and preferences of people with dementia as well as their caregivers. Both could benefit from support groups and legal and financial planning, though their needs and program delivery would be markedly different. Support services for people with dementia might include wellness programs, transportation, adult day services and residential care. Support for caregivers might include education and training, counseling, care management and respite care services.
5. Educate workers to identify possible dementia, understand its symptoms and provide appropriate services
Workforce training is needed for those in healthcare, direct care, public health, first responders, transportation, service industry and customer service and faith-based organizations, which are often the first to recognize change because they see people regularly and have known them for a years.
Elbein says he was called to do training at a Home Depot after a person with dementia walked out with a basket full of unpurchased merchandise. Workers reported the man as a shoplifter to local law enforcement. There was a confrontation in the parking lot that escalated quickly but could have been avoidable if workers and law enforcement had recognized his cognitive impairment.
6. Implement quality assurance systems that measure dementia service impact
Use continuous quality improvement standards to measure the satisfaction and experience for people with dementia and caregivers, evaluate dementia-responsiveness of system and assess a system's dementia capability.
7. Encourage developing dementia-friendly communities
Build a community where people with dementia are empowered, have high aspirations, feel confident, know they can contribute and participate in meaningful activities.