Some people think that when someone has dementia, that person becomes a shell of their former self.
We reject that notion.
Although cognitive and physical function is lost in the progression of a disease such as Alzheimer’s, we teach that every person can still experience love, joy, and dignity—at every stage of their disease.
We also advocate for a safer society, sharing our subject matter expertise to help develop public policies that improve care and safety.
My colleague Mary Secor and I were honored to be invited by Wisconsin Representative Rohrkaste’s office to give testimony on behalf of CPI to the Speaker’s Legislative Task Force on Alzheimer’s and Dementia
in Eau Claire, WI. Mary provided testimony to the task force on how our home state can better serve the growing population of individuals with dementia and address their needs.
It was a powerful event, and enormously heartening to see so many individuals, organizations, industries, and government groups share their expertise to help Wisconsin become a Dementia Capable State.
Mary’s testimony is below. Give it a read and let me know — what are your hopes for people with dementia in Wisconsin, another state, or around the world? For my part, I’m hopeful that initiatives like Wisconsin’s will result in legislation that ensures the best possible care for the people in our lives with dementia.
Also keep an eye here on the CPI blog for more comment letters like Mary’s. Based on CPI’s knowledge of best practices and our expertise in helping organizations raise the standard for high quality care, we regularly take part in public advocacy
to help make a safer society for every person.
Mary Secor and Nick Tendler
Testimony Provided to
Speaker’s Legislative Task Force on Alzheimer’s and Dementia
Eau Claire Wisconsin
December 9, 2015
Chairman Rohrkaste, Vice Chair Hesselbein, and Members of the Task Force:
Thank you for inviting me to speak today, and thank you also to Assembly Speaker Robin Vos for calling for this important task force. My name is Mary Secor, and I am the Vice President of Curriculum at the Crisis Prevention Institute, which is based here in Wisconsin. I am speaking today on behalf of the Institute, a national leader in training for human services professionals and dementia care providers.
For over 17 years, Dementia Care Specialists (DCS), a division of the Crisis Prevention Institute, has had the mission to create a Dementia Capable Society built on the knowledge that persons with dementia can feel joy, fulfillment, and love, no matter how advanced the stage of their disease. We do this by offering training and consulting services for professionals and organizations who care for individuals living with Alzheimer’s disease and related dementias (ADRD). Our training offers staff the skills to ensure that the people in their care are given the opportunity to flourish.
Alzheimer’s disease and dementia can be frightening for those affected, and for their families. The disease slowly and progressively affects an individual’s cognitive, physical, and sensory abilities. Some people may think of a person in later stages of dementia as a shell of their former self. We reject that notion. Although cognitive and physical function is lost in the progression of the disease, the individual can still experience love, joy, and dignity.
No matter which stage of the disease a person is in, he or she still has remaining abilities and should be given every chance to maximize those abilities and achieve a high quality of life. With appropriate training, care partners can use effective care approaches and create supportive physical and emotional environments that help individuals living with dementia to thrive.
The Crisis Prevention Institute has a long history of providing Dementia Capable Care
training to administrators, managers, and direct care providers. Our training includes:
- An examination of the impact of Alzheimer’s disease and related dementias on memory, cognition, and physical and sensory abilities.
- Step-by-step, practical ways to communicate and to provide person-centered care for individuals at each stage of dementia.
- Practical guidelines for adapting and customizing physical environments and programming to support individuals with dementia.
- Information for educating and supporting families whose loved ones are living with dementia.
As a result of our training, individuals living with dementia experience increased participation in meaningful activities and improved quality of life. Caregivers are able to provide a higher standard of care and experience improved job satisfaction. Family members learn specific techniques that enrich communication with their loved one and increase their confidence in the level of care their loved one is receiving. Providers improve business results such as increased census and staff retention, ensuring their continued operation in caring for this growing population.
The Crisis Prevention Institute applauds the efforts and initiatives of the state of Wisconsin currently underway to help those with Alzheimer’s disease and related dementias thrive. Having the involvement of so many different organizations, industries, and government groups from across the state gives us hope that Wisconsin is working toward becoming a Dementia Capable State.
Need for Family Caregiver Support
The need for quality dementia care is growing every day. Every 67 seconds, someone in the United States develops Alzheimer’s. In Wisconsin, there are currently 875,149 people over the age of 65. Approximately 12% of those seniors (or 105,000 people) have Alzheimer’s. Studies indicate that these individuals will live an average of 4 to 8 years after an initial diagnosis of the disease. Some individuals may live as long as 20 years with Alzheimer’s.
The impact of the disease is substantial, not only for the individuals living with the disease but also for those around them. People with Alzheimer’s disease experience losses in judgment, orientation, and the ability to understand and communicate effectively. Their personality and behavior are affected as well.
Family caregivers are often required to provide increasing levels of supervision and personal care as the disease progresses. A 2011 Aging, Demographics, and Memory Study
(ADAMS) found that primary family caregivers reported spending an average of 9 hours per day providing help to their loved ones. As symptoms progress, the care required can result in the family caregiver’s increased emotional stress, depression, impaired immune system response and general health, lost wages due to disruptions in employment, and depleted income and finances.
Intervention strategies to support family caregivers have been developed with multidimensional interventions appearing to be particularly effective. These interventions include:
- Case management programs that provide assessment, information, referral, and care coordination services that enhance family caregivers’ access to needed services and strengthen the family’s care support network.
- Structured programs led by professionals with specialized training that provide information about the disease and skills to effectively respond to care-related needs and cognitive and behavioral symptoms of the disease.
- Counseling, support groups, and respite care to help caregivers cope with, and manage, the changes that occur as dementia progresses.
- And training of the person with dementia to promote their remaining abilities and competence.
Caregiver-focused interventions are effective in reducing behavioral or psychiatric problems in people with dementia and have shown to prevent or delay nursing home admission.
The Need for Quality Dementia Care
The need for education and support extends beyond family caregivers. According to the CDC, in 2012, 39.6% of residential care community residents and 48.5% of nursing home residents had a diagnosis of Alzheimer’s disease. Direct-care workers, such as nursing aides and home health aides, comprise the majority of the formal healthcare delivery system for older adults. Direct-care workers have difficult jobs, and they may not receive the training necessary to provide quality dementia care. One review found that direct-care workers received, on average, 75 hours of training that included little focus on issues specific or pertinent to dementia care. Turnover rates are high among direct-care workers, and recruitment and retention are persistent challenges. Other professionals, including physicians, nurses, social workers, pharmacists, and caseworkers, also receive limited specialized training in caring for older adults.
In 2006, the Alzheimer’s Association released a study on Dementia Care Practice Recommendations for Assisted Living Residences and Nursing Homes
. The study found that quality of life was better in facilities that used a specialized worker approach (where staff have specialized roles), trained more staff in more areas central to dementia care, and encouraged residents to participate in activities. From the
resident’s perspective, quality of life was higher in facilities that more frequently involved more staff in care planning and whose care providers felt more hope with beliefs that residents can make decisions, that they will not unavoidably go “downhill,” and that feeling attached to residents need not be avoided. The study concluded that “improvement in resident quality of life may be achieved by improved training and deployment of staff.”
We believe that it is crucial to better serve individuals who have dementia with increased education and support for family caregivers, mandated dementia training for paid direct-care workers, additional training for healthcare professionals, and the establishment of standards for facilities promoting memory care services. This will enable individuals with dementia to function to their fullest ability within their homes and communities and through each stage of dementia.
Current Examples – Who Is Currently Setting Standards?
Multiple states have started working toward becoming Dementia Capable Societies. Massachusetts
is one of them. In 2014, they passed legislation (105 CMR 150) that requires organizations with specialized Dementia Care Units, and any organization that “uses any word, term, phrase, or image, or suggests in any way, that it is capable of providing specialized care for residents with dementia,” to have 8 hours of dementia-specific training. These facilities are also required to have at least one therapeutic activities director on staff and to be person-centered with a focus on supporting residents’ visual, lighting, spatial, recreational, and safety needs.
These standards were put in place to ensure that residents in these organizations have access to the best possible care. They were also designed so organizations would not be able to advertise for services they are not trained to offer.
Another state that has a similar training requirement is Minnesota
. Their legislation (HF2402) requires supervisors and direct-care employees to have 8 hours of training, and staff that do not provide direct care need 4 hours of specialize training.
Best Industry Practices: Joint Commission – Memory Care Advanced Certification
The Joint Commission, an independent not-for-profit organization, accredits and certifies nearly 21,000 healthcare organizations and programs in the US. In July of 2014, the Joint Commission established a new memory care certification designed to help accredited nursing care centers enable patients and residents with dementia to remain engaged in their environment at the level of their cognitive ability—and to function at the highest level possible for as long as possible.
To secure the advanced certification, organizations must meet requirements in five key areas including:
- Care coordination, in which staff collaboratively assess, plan, and provide care that is consistent with current advances in dementia care practices.
- Staff knowledge and competency, where staff have the qualifications, skills, training, and education to assess and provide care for a patient or resident with memory impairment.
- Activity programming that is based on the patient’s or resident’s cognitive abilities and physical function.
- Behavior management strategies that emphasize the use of nonpharmacological interventions as an alternative to antipsychotic medical use.
- Safe and supportive physical environments that are modified to promote safety and minimize confusion and overstimulation.
Based on our national experience, and the best practices as recommended by the Alzheimer’s Association and the Joint Commission, we would support legislation that would:
- Mandate evidence-based specialized training for all those caring for individuals with Alzheimer’s disease and related dementias and attach these requirements to state licenses for assisted living facilities that provide care to those with dementia.
- Increase the transparency between long-term care organizations and the families of those they serve by mandating disclosure statements on programming, and admonishing organizations that mislead the public about their capacity to provide specialized care for those with dementia.
- Provide incentives for organizations looking to build memory care units using evidence-based practices that would enable them to provide specialized care for individuals with dementia.
- Promote the development of career pathways that would address the shortage of health care professionals trained in geriatrics.
We look forward to the opportunity to help foster the laudable goals of the committee and to be a valuable contributor in this dynamic and long overdue campaign to make Wisconsin a Dementia Capable State. I thank you for your time and attention to this important issue. Should you have any questions, please feel free to contact me at the Crisis Prevention Institute.
Mary M. Secor
Vice President, Curriculum
Crisis Prevention Institute
10850 W. Park Place, Suite 600
Milwaukee, WI 53224
Joint Commission Memory Care Requirements for Nursing Care Center Accreditation: Alignment to Dementia Capable Care Training [PDF