Society of Certified Senior Advisors: Coffee Break

A groundbreaking project records the experiences of people with dementia, promoting the voices of those who live with the disease.

We need to educate society that dementia touches many people in many different ways. We need to dispel the myths. Dementia is everyone’s business. —Anne MacDonald

Dementia Diaries is a project recording the voices of people across the United Kingdom who are living with dementia. Anyone can read or listen to current posts by clicking on the photo of the desired diarist, making it seem almost as though you’re sitting across from the person at home, listening to a piece of conversation. In fact, there’s a page where you can meet the current diarists and Listen to archived audio diaries.

Volunteer to Transcribe

Anyone can assist in the Dementia Diaries project by helping to transcribe audio diaries. You don’t even have to sign up! Simply navigate to the volunteer page and follow the simple instructions.

You can do one conversation, or as many as you like. You don’t need to commit to further transcriptions, but can simply return to the site to help out whenever you feel like it. There is a tab at the top for audio diaries that need transcribing.

Everyone from activists to artists have joined the project to contribute their views. While many people seek to provide the best experience for a spouse or patient experiencing dementia, this site is different in that it is exclusively available to those who have been diagnosed with the disease. Although people in the United States are unable to contribute, any English speaker can access the site and offer feedback and reflections, available at the end of each post.

Dementia Content is Diverse

Diarists are not limited in subject matter, so readers can find snippets on a variety of topics. Some recent posts covered death and dying with dementia (should a person be able to choose when to die?), how dementia affects one contributor’s ability to support others and a compilation of gardens in celebration of National Gardening Week.

A range of emotions are exposed as contributors argue for consistency of care, express gratitude for small acts of kindness or ruminate on daily difficulties. Naturally, there are posts that tend toward despair (Carol’s “This last month has been dreadful for me!”) but you don’t have to look far to find a wide range of themes.

Navigate to the Key Themes page to find topics of interest, such as family and friends, diagnosis, memories and daily challenges. All of the headings listed apply to those living with dementia in the U.S. Even the health and social care listing has relevant concerns, despite socialized health care in the U.K. Readers have only to browse entries such as “Dory educates her taxi driver” or “Can people with dementia self-manage?” to realize that there are a plethora of universal themes across the pond.

Readers have the choice of following one contributor, or pecking through posts from a variety of diarists. Someone with dementia may want to take their journey with a contributor who shares a similar age, sex and viewpoint, for example.

About the Project

Because it can become difficult to master technologies as dementia progresses, contributors can use their own mobile or land line phones. 3-D printed handsets that are intentionally as simple to use as possible are also available.

“Our shared aim is that by opening up our lives to the public we will improve understanding of the diverse experiences of living with dementia and how communities and services can best offer support,” according to information on the site.

The project is an arm of the Dementia Engagement and Empowerment Project (DEEP) and designed by non-profit communications agency On Our Radar. The effort is currently funded jointly by the BIG Lottery Fund and Comic Relief.