Dementia and Disability Rights

The overall aim of this project is to investigate if supporting people newly diagnosed with dementia as people with acquired disabilities - at the time of diagnosis, or soon after diagnosis, will improve their post diagnostic support and experiences.

Specifically, it will investigate if this leads to reducing stigma, and increasing self-determination, independence, and quality of life of people with the lived/living experience of dementia. It will also examine if not supporting people with dementia as people with acquired disabilities from the time of diagnosis, may be central to their known poor post diagnostic experiences, and ongoing known violations of human rights. 

Research participants:
- People with the lived/living experience of dementia, active as advocates for at least two years
- Care partners and family members of people with dementia (past or current), active as advocates for at least two years
- Health care professionals
- Formal advocates such as lawyers, disability and human rights experts
- Researchers

Ways to participate:
- 1:1 Interview 
- International Expert Advisory Group 
- Attend RoundTable Workshop(s) 
- Potential to co-author an article or report 
- Potential to participate in a webinar 

Eligibility criteria:
1. People with the lived/living experience of dementia for 2 or more years, who are active as advocates.
2. Care partners and/or family members (past or current) of people living with dementia for 2 or more years, who are active as advocates.
3. Access to the internet and email.
4. This study is limited to English speaking participants, as there is no funding for interpreters.
5. This study is limited to participants residing in countries where there is an active dementia charity operating. This is to ensure psychological support and a helpline specifically for people with dementia and care partners and family members is available, beyond the services such as a crisis Lifeline.

Exclusion criteria:
1. People who do not speak English.
2. People without access to the internet or an email.
3. People residing in countries where there is not an active dementia charity providing psychological support and a helpline to people with dementia or care partners and family members of people with dementia.