Dementia Friendly Nevada

People living with dementia are not defined by their diagnosis. In order to support each person in living well with dementia, we must break the stigma of dementia and focus on strengths instead of just losses. Rather than using terms like “dementia sufferer” or “Alzheimer’s patient” that focus on the tragedy of dementia, we can honor the humanity of all people by using person-first language, like “people living with dementia.” People can live well with dementia when they are offered opportunities for meaning, purpose, and growth.

People living with dementia are the genuine experts in the experience of living with dementia. Their perspectives, wishes, and preferences should always be respected in the decisions that affect their lives. Doing so requires understanding each person as a unique human being, as generalizations based on “age” or “stage” are limiting and often wrong. After all, if you know one person living with dementia, you only know one person living with dementia.

People living with dementia can and do communicate and express themselves meaningfully throughout their dementia. What people talk about as “behavioral and psychosocial symptoms of dementia” (or “BPSDs”) are often forms of communication, where people living with dementia are expressing their identity, preferences, or unmet needs in the best way they can. Instead of seeing these so-called “behaviors” as problems, care partners and professionals should seek to understand, validate, and respond to what a person is trying to say through their actions.

“Redirection” is a code-word for distracting or charming someone living with dementia into doing what you want them to do. Instead of redirecting, care partners and community members should respond supportively and seek to understand the world from the other person’s perspective.

Sometimes what makes care partners feel safe and secure makes people living with dementia feel trapped and anxious, including locked doors. People living with dementia have the right to access care and support in the least restrictive manner and should never be segregated. Residential care settings should not merely be “homelike;” they should be actual homes that uphold the right to self-determination. To support this right, safety and freedom should always be balanced, and connections to community should always be protected and promoted. We must always seek to foster security while upholding personal choice, and there are many ways to promote safety besides locked doors.

Though most forms of dementia are degenerative, people living with dementia can continue to grow and thrive when care partners and organizations honor the right to autonomy and privacy and avoid protective measures that medicalize, monitor, and control all aspects of everyday life.

Communities and service agencies should offer affordable, easy-to-access help and support for everyone. With a focus on early detection and proactive community-based supports and services, we can avoid the need for expensive and reactive medical interventions and institutional care settings. When institutional care is necessary, people living with dementia should have access to affordable, high-quality residential care that nurtures each person’s well-being and upholds their personal decision- making to the greatest extent possible. This requires having enough staff on-hand to fully support each person.

Just as the Americans with Disabilities Act ensures ramps for people living with physical disabilities, it should also ensure that communities provide adaptations and supports (in essence, “cognitive ramps”) for people living with dementia and other cognitive disabilities. When we support and include people living with dementia, it enhances their well-being. It also makes our communities stronger. Elders need communities and communities need elders!