This page presents some voices of persons from dementia from across the world. Hopefully these will give readers some insight on what someone with dementia experiences while they are still able to articulate their thoughts. Many of these voices are of early onset persons in relatively early stages of their dementia, but they may still give some insight. Unfortunately, no public voices of persons with dementia were available from India.
One good collection of videos by persons with dementia is available from Dementia Mentors Opens in new window . See the videos at the site or in the Vimeo album at Dementia Mentors Video ArchiveOpens in new window.
Some blogs are:
- Ken Clasper, a person with Lewy Body Dementia blogs at Ken Clasper: Living well with Lewy Body Dementia Opens in new window. (Includes experiences in COVID and lockdown times.)
- Susan Parish, and early onset AD person: Susan Parish: My Journey with Alzheimer’s Opens in new window
- Kris, an early onset AD person and dementia advocate shares thoughts and memories on her first blog Opens in new window and has later moved the blog here: Dealing with Alzheimer’s Blog Opens in new window.
- Christine Byrden, person with dementia, advocate, and author: Dementia From an Insider’s Perspective, Christine Bryden Opens in new window. This also includes many videos and books presenting her experiences.
- Joe (Joseph) Potocny’s chronicle of his journey with Alzheimer’s (includes link to his book): Living with Alzheimer’s Opens in new window.
Stories by persons with dementia are also available on various Alzheimer sites or can be seen in forums where they participate. News articles with personal stories are also available, and may be especially useful for FTD, such as When Illness Makes a Spouse a Stranger Opens in new window a detailed story of a person with FTD, and Inside The Mind Of Frontotemporal Degeneration: A Patient’s Story Opens in new window, which describes the experience of Howard Glick.