Mobilizing Beliefs

At the outset of the Dementia Friendly Nevada initiative, people living with dementia who were are part of our network were asked to brainstorm a set of mobilizing beliefs the they felt represented the mission of Dementia Friendly Nevada and that presented a vision for the type of friendly and inclusive community they hoped to create. These values lie front and center in everything we do.

Dementia Friendly Nevada Mobilizing Beliefs

Dementia Friendly Nevada is guided by a deep belief that each person living with dementia remains, and will always remain, a full human being and his or her rights as a citizen are, and shall always be, intact. To guide dementia-friendly and inclusive efforts, we offer a set of mobilizing beliefs, which can help serve as a type of ethical roadmap for restoring and ensuring fundamental rights and opportunities to people living with dementia who have been disenfranchised by a prevalent view that discounts and diminishes their value and potential contributions to our communities and state. People are living with dementia. In order to support each person in living with dementia, we must destigmatize dementia and see beyond the common tragedy narrative. People can live well with dementia when they are afforded with opportunities for meaning, purpose and growth.

• People living with dementia are not their diagnosis. Person-first language should replace labels such as ‘dementia sufferer’ or ‘Alzheimer’s patient’. Such labels perpetuate an ‘us versus them’ mentality. In truth, all human beings are forgetful; some are just more forgetful than others.

• If you know one person living with dementia, you only know one person living with dementia. Generalizations based on notions of ‘age’ or ‘stage’ are limiting and often wrong. Understanding the experience of living with dementia requires understanding each person as a unique human being.

• People living with dementia are the genuine experts in the experience of dementia. Their perspectives, wishes and preferences should always be sought and respected in the decisions that affect their lives. Truly engaging each person living with dementia as a legitimate contributor to his or her own experience opens a world of possibilities.

• People living with dementia can and do communicate and express themselves meaningfully across the entire continuum of the disease experience. It is important that care partners and community members develop the ability to listen with more than their ears and to speak with more than their words.

• Contrary to the increased use of the term, there is no such thing as “behavioral and psychosocial symptoms of dementia” (BPSDs). So-called “behaviors” are actually a form of communication; communicating identity, preferences and/or unmet needs. Instead of pathologizing behaviors, care partners and professionals should seek to understand and validate personal expressions, actions and reactions.

• Sometimes, what makes care partners feel safe and secure makes people living with dementia feel trapped and anxious.

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

• 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 (i.e., cognitive ramps) for people living with dementia and other cognitive disabilities.

• Communities and service agencies need to offer affordable, accessible and proactive community-based supports and services. The more energy and resources devoted to community-based supports and services, the less need there is for expensive and reactive interventions and institutional care settings.

• People living with dementia should never be segregated, like convicted criminals. Each citizen has the right to live freely and safely in the community of their choosing. Even in circumstances where a person requires additional support due to cognitive impairment, the living environments offered should be normalized, inclusive and not merely ‘homelike’ but an actual home, without restrictions or restraints on one’s freedom. There are many ways to guarantee safety besides locked doors.

• Persons living with dementia should have access to affordable person- and relationship-centered residential care and support that nurtures each person’s well-being and upholds their right to autonomous decision making to the fullest extent possible. This requires an appropriate care partner to resident ratio.

• Though most forms of dementia are degenerative, people living with dementia can continue to grow and thrive when care partners and organizations avoid the tendency to medicalize, sterilize and surveil all aspects of everyday life.

• Supporting engagement, autonomy and partnership with people living with dementia will promote improvements to their quality of life and well-being, and strengthen the social fabric of communities. Elders need communities and communities need elders.

While each of these mobilizing beliefs are represented in various ways by Dementia Friendly Nevada, the responsibility to ensure that all people living with dementia are respected and valued as active citizens and important members of our communities resides with all community members and leaders.