Inclusivity Means Recognizing Every Dementia Experience

When people hear the word “dementia,” many immediately think of memory loss. But dementia is not one single condition, nor does it affect everyone the same way. True inclusivity means understanding that people living with dementia experience the world differently — and that every experience deserves dignity, respect, and support.

At FTD Canada, we believe inclusivity goes beyond accessibility ramps, large-print resources, or supportive language. Inclusivity also means recognizing the many forms of dementia and the unique journeys of the people and families living with them.

Dementia Is Not One-Size-Fits-All

Dementia is an umbrella term for a range of neurological conditions that affect thinking, behaviour, communication, movement, and daily functioning. While Alzheimer’s disease is the most widely known, there are many other types of dementia, including frontotemporal dementia (FTD), Lewy body dementia, vascular dementia, and younger-onset dementias.

Each condition can present differently.

Some individuals may experience significant memory changes. Others may struggle more with language, personality shifts, emotional regulation, visual processing, or movement. In conditions like FTD, changes in behaviour or communication may appear long before memory is noticeably affected.

This diversity of symptoms means many people living with dementia do not fit the stereotypes society often expects.

Different Experiences, Different Challenges

Inclusivity requires us to move away from assumptions.

A younger person living with dementia may still be working, parenting, or financially supporting a family. Someone with language-based dementia may appear physically healthy while silently struggling to communicate. A person with behavioural symptoms may face misunderstanding, stigma, or judgment in public spaces.

Care partners and families also experience dementia differently depending on the diagnosis, stage of progression, available support systems, culture, language, and financial circumstances.

There is no “typical” dementia journey.

Recognizing this helps create communities where people feel seen instead of dismissed.

Why Representation Matters

When only one type of dementia story is shared publicly, many individuals and families feel isolated.

Representation matters because it validates lived experiences. It helps people receive earlier diagnoses, find appropriate support, and connect with others who understand their reality.

It also challenges harmful misconceptions.

Not every person with dementia is elderly. Not everyone loses memory first. Not everyone’s symptoms are visible. And not every individual experiences dementia in the same cultural or social context.

An inclusive society makes room for all of these experiences.

Building Dementia-Inclusive Communities

Creating inclusive spaces for people living with dementia starts with awareness, but it must continue with action.

Communities, workplaces, healthcare providers, and social organizations can support inclusivity by:

• Learning about different dementia types and symptoms

• Using respectful, person-centred language

• Avoiding assumptions about abilities or needs

• Supporting accessible communication styles

• Creating calm, welcoming environments

• Listening directly to people with lived experience

• Recognizing the diversity of caregivers and families

  
  

Small changes can make a significant difference in helping people feel safe, respected, and included.

Listening to Lived Experience

One of the most powerful ways to foster inclusivity is to listen.

People living with dementia are experts in their own experiences. Their voices should be part of conversations about healthcare, research, policy, community planning, and public education.

When we listen without judgment, we create space for understanding. We also move closer to a society where people affected by dementia are not defined solely by diagnosis, but recognized as individuals with identities, relationships, strengths, and meaningful lives.

Inclusivity Means Everyone

At its core, inclusivity means making sure nobody is left out of the conversation.

That includes people living with all forms of dementia, caregivers navigating different realities, and families whose stories may not reflect the stereotypes people expect.

By embracing the diversity of dementia experiences, we create communities grounded in empathy, respect, and belonging.

And that benefits everyone.

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