What is dementia inclusive? Understanding a holistic approach to care and community

According to the World Health Organization, over 55 million people live with dementia worldwide, yet stigma and exclusion are common experiences. What is dementia inclusive is the framework that seeks to address this by moving beyond mere tolerance to create genuinely welcoming and empowering environments for those with cognitive impairment and their caregivers. It involves systemic changes to policy, practice, and attitudes to promote social participation and well-being.

Quick Summary

Dementia inclusivity is a comprehensive approach that empowers individuals with dementia to participate meaningfully in society. It involves systemic changes in attitudes, environments, and policies to ensure people with cognitive impairment feel valued, respected, and socially connected.

Key Points

• Inclusivity vs. Friendliness: Dementia inclusive goes beyond being 'friendly' by actively involving and empowering people with dementia in decision-making processes, rather than just accommodating them.

• Empowerment is Central: This approach sees individuals with dementia as experts on their own experiences, actively incorporating their insights to co-create solutions that improve their lives.

• Systemic Change Required: True inclusivity involves addressing systemic issues through policy, organizational culture, and resource allocation, not just individual actions.

• Holistic Design: Dementia-inclusive design considers how cognitive impairments affect perception, focusing on clear wayfinding, reduced clutter, and comfortable acoustics to create safe and navigable spaces.

• Breaks Down Stigma: Education and awareness programs are used to combat the stigma and social isolation that often accompany a dementia diagnosis, fostering a culture of respect and understanding.

• Benefits Everyone: The principles of dementia inclusivity, such as clear signage and accessible design, lead to universal benefits that improve the community for people of all ages and abilities.

From "Dementia-Friendly" to "Dementia-Inclusive"

The concept of supporting those with cognitive decline has evolved over time. While the "dementia-friendly" movement primarily focuses on increasing general public awareness and creating easier-to-navigate spaces, what is dementia inclusive takes a more profound, holistic, and empowering approach. An inclusive community or organization actively involves people living with dementia and their caregivers in the planning and decision-making processes, rather than simply making accommodations for them.

Core principles of a dementia inclusive society

• Empowerment through Involvement: Individuals with dementia are recognized as experts in their own right. They are meaningfully engaged in shaping policies, services, and community activities that affect their lives, which fosters a sense of purpose and belonging.
• Reduction of Stigma: A dementia-inclusive culture works to dismantle the stigma and misconceptions associated with cognitive impairment. Through widespread education, the focus shifts from the person's deficits to their remaining strengths and abilities.
• Accessibility and Usability: This goes beyond simple ramps and handrails. Inclusive design for the physical and digital world considers how cognitive changes affect perception and navigation. Examples include clear, high-contrast signage and predictable layouts that reduce confusion.
• Integrated Healthcare: Inclusive communities integrate healthcare services seamlessly into the community, ensuring medical care, mental health support, and therapies are easily accessible and tailored to individual needs.
• Community Collaboration: Achieving true inclusivity requires multi-sectoral partnerships between local businesses, non-profits, healthcare providers, and government agencies. This collective action is necessary to address the complex needs of people with dementia.

Creating a Dementia Inclusive Environment: Practical Steps

Transitioning from friendly to inclusive requires actionable steps across different community sectors. This involves re-evaluating existing practices and designing new initiatives with the person with dementia at the center.

Physical space improvements

• Clear Wayfinding: Use simple, high-contrast signs with clear symbols. Building entrances should be obvious and easy to identify.
• Reduce Clutter: A clear, minimalist environment reduces overstimulation and confusion. Use contrasting colors to distinguish furniture from walls and floors.
• Comfortable Acoustics: Install sound-absorbing materials and create quiet areas. Certain ambient sounds, like running water, can be calming.

Organizational culture and training

• Staff Education: Implement regular training for staff in businesses, emergency services, and community centers. The training should focus on effective communication techniques, empathy, and understanding cognitive changes.
• Inclusive Activities: Offer activities that are appropriate for people at various stages of dementia. Ensure that these are not isolated events but are integrated into existing community programs.
• Policy Review: Governments and organizations should review policies to ensure they support, rather than hinder, the participation of individuals with dementia.

Comparison: Dementia-Friendly vs. Dementia-Inclusive

To highlight the distinction, the following table compares key characteristics of a dementia-friendly approach with a dementia-inclusive one.

Feature	Dementia-Friendly Approach	Dementia-Inclusive Approach
Involvement of PwD	Limited; typically via surveys or feedback after implementation.	Active and meaningful; people with dementia are co-creators of initiatives.
Core Goal	Increase public awareness and make environments easier to navigate.	Promote social inclusion, empowerment, and genuine participation.
Focus	Primarily on external accommodations and general understanding.	Holistic; includes policy, design, technology, and cultural changes.
Role of Individual	Passive recipient of accommodations and public understanding.	Empowered citizen with rights, capabilities, and a valued voice.
Scope	Often focused on specific, targeted projects (e.g., a "Dementia Friends" session).	Systemic and community-wide, involving a broad coalition of stakeholders.

Challenges to Achieving Dementia Inclusivity

Despite the benefits, several challenges hinder the transition to a truly inclusive society. Many of these issues are rooted in systemic biases and resource limitations.

• Cultural and Linguistic Barriers: Different cultures may hold varying beliefs about dementia, affecting how families seek help. Inclusive programs must be culturally tailored and consider linguistic diversity to be effective.
• Resource and Funding Disparities: Initiatives often face limitations in financial resources. Many programs rely on grants or in-kind support, which can be unstable.
• Intersectional Inequities: Factors like ethnicity, socioeconomic status, and geography can compound the challenges faced by people with dementia. Policies must address these systemic disparities to foster true equity.
• Exclusion of Voices: In some instances, initiatives intended to be inclusive still fail to adequately center the voices and experiences of people with dementia, leading to less effective outcomes.

Benefits of a Dementia-Inclusive Community

The move toward a dementia-inclusive society creates a ripple effect of benefits that extend far beyond the immediate dementia community. By designing for cognitive and sensory needs, the built environment becomes more user-friendly for everyone—from children to individuals with other disabilities. The reduction of stigma fosters greater empathy and social cohesion. For individuals with dementia, the benefits are profound, leading to improved quality of life, maintained social connections, and a stronger sense of purpose and belonging. A dementia-inclusive approach also benefits caregivers by providing stronger support networks and reducing feelings of isolation.

Conclusion: A More Empowered Future

What is dementia inclusive represents a forward-thinking paradigm shift in how society supports individuals with cognitive impairment. It elevates people living with dementia from passive recipients of care to active participants in their communities. By addressing systemic barriers, promoting empowerment, and fostering genuine collaboration, a dementia-inclusive society improves well-being for all its members. This holistic approach, grounded in respect and dignity, not only supports people with dementia to live well but also enriches the entire community by creating a more compassionate and understanding culture.

Learn more about creating a dementia-inclusive community through the Alzheimer's Association.

Frequently Asked Questions

How does dementia inclusive differ from dementia friendly?

A dementia-friendly approach focuses on making a community more accessible and easier to navigate for individuals with dementia through public awareness and simple environmental changes. A dementia-inclusive approach goes further by actively involving people with dementia in the planning and decision-making process, treating them as empowered co-creators of their community.

Why is it important to include the voices of people with dementia?

Including the voices of people with dementia ensures that initiatives and services are relevant, practical, and truly meet their needs. It promotes empowerment, counters stigma, and helps them maintain a sense of purpose and dignity by valuing their expertise and lived experience.

What are some examples of a dementia inclusive community?

Examples include communities where local policies are developed with input from dementia advocacy groups, businesses train staff on inclusive communication, public spaces incorporate clear signage and quiet areas, and intergenerational programs are organized that meaningfully involve people with dementia.

What kind of training is involved in becoming dementia inclusive?

Training can range from one-hour educational sessions for business employees to comprehensive virtual courses for healthcare professionals. It typically covers understanding dementia, effective communication strategies, creating welcoming environments, and utilizing person-centered approaches.

How can businesses become more dementia inclusive?

Businesses can become more inclusive by training staff to recognize and assist customers with dementia, adjusting physical layouts to reduce confusion (e.g., clear signs, non-glare flooring), and creating a more patient and understanding service culture.

Does dementia inclusivity benefit anyone besides people with dementia?

Yes, dementia inclusivity benefits the entire community. Accessible design features assist people of all ages and abilities, awareness-raising efforts reduce stigma, and creating a more compassionate society improves quality of life for everyone.

What are the biggest challenges to building a dementia inclusive society?

Major challenges include overcoming stigma, addressing cultural and linguistic barriers in diverse communities, securing consistent funding for initiatives, and ensuring the genuine involvement of people with dementia rather than tokenistic participation.