The Key to Unlocking Dementia

Abraham Maslow, best known for creating the hierarchy of needs theory, understood that we are born with passions and interests that bring us meaning and purpose. He once said, “A musician must make music, an artist must paint, a poet must write, if he is to be ultimately at peace with himself. What a man can be, he must be.” 

This quote shows that he knew when we are prevented from pursuing our passions, we cannot be truly happy or feel completely whole. The opportunity to engage with our surroundings meaningfully each day is a basic human right. The freedom to do this must be protected by providers who are serving older adults in our industry. Too often though, communities put a lock on this freedom, especially for those living with Alzheimer’s disease and related dementias, by using environmental, social, physical and even chemical restraints that can result in loneliness, helplessness and boredom. 

October is Residents’ Rights Month, a good time to celebrate the progress made toward completely removing physical and chemical restraints in long-term care. The Centers for Medicare and Medicaid Services (CMS) reported in 2015 that less than 1% of residents in nursing homes nationwide had been physically restrained in the last seven days. Yet, chemical restraints remain a problem, even after The National Partnership to Improve Dementia Care in Nursing Homes helped bring the national prevalence of nursing home residents receiving an antipsychotic medication from 23.9% in Q4 of 2011 to 14.6% in Q4 of 2018. There is a plateau that can be seen in the national prevalence which shows that it remained at 14.6% in Q2, Q3 and Q4 of 2018. While progress has been made, we need to ask what is next?

Restraints come in many forms, beyond those that are chemical and physical. The environment in which a person lives can be a restraint, look no further than residents living with dementia who are often spending their days behind locked doors. Even the way we treat an older adult when we interact with them can act as a restraint. The phrase “surplus safety” was coined by Dr. Bill Thomas and refers to a situation in which a community removes any activities that may be considered too “risky” for residents so that they can be protected. Surplus safety can actually inhibit growth and development for older adults, leading to feelings of hopelessness and boredom. A better way forward is to find the right balance of autonomy and safety that is rooted in each resident’s unique risk tolerance and freedom of choice.

Thankfully, there are providers who are committed to eliminating all restraints and instead directing their resources into meaningful and person-centered engagement strategies. Kendal on Hudson, a life plan community in New York state, launched “Project Zero” in 2016, an initiative to reduce unnecessary drugs to zero for residents in order to focus on the goal of “untying the elderly.” A Linked Senior case study showed that in just six months, using meaningful engagement as a key intervention, the organization was able to reduce antipsychotic drug use from 17% to zero. 

Kendal on Hudson is an affiliate of the Kendal Corporation based in Kennett Square, PA. The Kendal Corporation embarked on its own restraint reduction initiative in 1986 with its “Untie the Elderly” vision that resulted in federal legislation in 1990 that required nursing facilities to consider the harm caused by restraints on the health and well-being of residents. One leader in this culture change movement is Pioneer Network which was founded in 1997 by a small group of prominent professionals in long-term care who were pioneers in changing the culture of aging, care and support. Another organization that is helping caregivers to nurture respect, dignity and well-being in the lives of older adults is the Validation Training Institute.

Linked Senior is proud to be sponsoring an “EngageAThon” competition this month in partnership with its clients to raise funds for Pioneer Network to support their effort to remove the physical restraints currently being sold on Amazon.com. Penny Cook, CEO and President of Pioneer Network, is happy to see this kind of advocacy saying, “Pioneer Network has promoted and educated about individualized, person-centered care since its inception, ensuring that care and support is life-affirming and humane.” 

Honoring every older adult means validating who they are and this can be accomplished by acknowledging that finding meaning regardless of your age or diagnosis is a basic human right.

Every person has the right to be valued and respected. Research increasingly supports the success of person-centered engagement strategies for supporting those living with dementia. When our industry celebrates what an older adult can do, rather than what their diagnosis prevents them from doing, restraints of all kinds are shattered, especially for those living with dementia, and a more meaningful and purposeful existence is unlocked.