Personal experiences of living with dementia

Personal accounts of living with dementia can be an invaluable support to people with dementia and give insight to all who work in this area. The Dementia in Europe magazine runs a regular feature about peoples' experiences from different countries around Europe.

In this section we have contributions from and/or summaries of literature about peoples' experiences of living with dementia.

To read news articles written by people living with dementia, please also see our news section called Living with dementia.

2019

• May: Idalina Aguiar, member of the European Working Group of People with Dementia, finds music therapy beneficial
• May: Petri Lampinen,member of the European Working Group of People with Dementia, takes part in a video to help spread awareness
• April: Carol Hargreaves, member of the European Working Group of People with Dementia, likes to keep busy
• April: Idalina Aguiar celebrates Statute of Informal Caregiver being passed in Madeira
• March: Tomaž Gržinič, member of the European Working Group of People with Dementia, celebrates his love of sailing
• February: Idalina Aguiar tells us about meeting the President of the Republic of Portugal with the National Association of Informal Caregivers
• February: Kevin Quaid shares his experience of diagnosis and his shift in perspective since joining the Irish Dementia Working Group
• January: EWGPWD member Amela Hajrić tells us about a recent conference she attended in her country

2018

• November: Idalina Aguiar tells us about her former EWGPWD colleague Nina Baláčková’s visit to Madeira Island
• November: Helen Rochford Brennan reflects on progress made during her 4 years so far as Chair of the EWGPWD
• October: Carol Hargreaves, member of the EWGPWD, shares some positive aspects of her dementia
• September: Idalina Aguiar, member of the EWGPWD, tells us how she marked World Alzheimer’s Day 2018
• September: Petri Lampinen, member of the EWGPWD, tells us about his speech at the Alzheimer Society of Finland’s 30th anniversary gala
• September: Tomaž Gržinič talks to Spominčica magazine about dementia and technology
• August: Chris Roberts and Jayne Goodrick talk about the importance of patient engagement
• August: Former vice-chair of the EWGPWD, Alv Orheim, shares his experience of the Nordic Dementia Conference
• June: Helen Rochford-Brennan shares her experience of the Galway conference
• June: Idalina, member of the EWGPWD, advocates for recognition of carers in Portugal
• May: Tomaž Gržinič, member of the EWGPWD is interviewed on national TV in Slovenia
• May: Champions of dementia unite to raise awareness
• May: Carol Hargreaves shares her experience of diagnosis and shows that there is hope
• March: Idalina Aguiar tells us about her EWGPWD colleague Petri Lampinen’s visit to Madeira Island
• March: Idalina Aguiar, member of the EWGPWD, is campaigning for a Statute for informal carers in Portugal
• March: Geert Van Laer gives us his thoughts on joining the EWGPWD
• March: Wendy Mitchell blogs about a new Design School for people with dementia
• February: Helga Rohra writes about her participation in the recentINDUCT Winter School
• February: Idalina Aguiar writes about her participation in the recent meeting of the EWGPWD
• January: Carol Hargreaves, member of the EWGPWD, tells us about a recent meeting of the Scottish Dementia Working Group

2017

• December: Nina Balackova, member of the EWGPWD, reports on her involvement over the lasts months
• December: Helen Rochford-Brennan Chair of the EWGPWD promotes better care for people with dementia
• December: Good news from Idalina Aguiar about a new centre for people with dementia in Madeira
• December: Petri Lampinen talks about his experience of joining the EWGPWD in September
• November: Carol Hargreaves, member of the EWGPWD speaks about coping with good and bad times
• November: Karin reports about a meeting with a pharmaceutical company in Sweden
• October:  Idalina, member of the EWGPWD very active in Portugal and Spain
• October: Petri Lampinen, member of the EWGPWD, writes about rehabilitation and dementia in Finland
• September: Chris Roberts, Vice Chair of the EWGPWD, reports about the INDUCT summer school in Salamanca
• August: Helga Rohra, member of the EWGPWD, writes “Dementia goes to school”
• August: Idalina Aguiar, member of the EWGPWD, writes about her recent activities
• June: Helen Rochford Brennan, EWGPWD Chirperson, participates in “Don’t Judge” project.
• May: Idalina Aguiar, member of the EWGPWD, writes about Laughter Therapy
• May: Alv Orheim, Vice-Chair of the EWGPWD, writes “Brief observations from the Norwegian working group”
• May: Ronan Smith, Chair of the Irish Dementia Working Group, advocates for people with dementia and for carers in equal measure
• May: Carol Hargreaves, member of the EWGPWD, updates us on her situation
• April: Karin Gustafsson, member of the EWGPWD, writes about her diagnosis in 2014
• March: Idalina Aguiar, member of the EWGPWD, writes “A busy month…with a smile”
• March: "Living with dementia in Finland – my experience" by EWGPWD member Markku Parkkisenniemi.
• March: “Awareness Activities as a member of the EWGPWD”- by Idalina Aguiar member of the EWGPWD
• February: EWGPWD member Nina Baláčková writes about her trip to Asia Pacific Alzheimers
• February: “Getting involved in Cultural Activities even when we have Dementia” - by Idalina Aguiar member of the EWGPWD
• January: EWGPWD member Helga Rohra writes about speaking at Alzheimer Society of Finland conference
• January: EWGPWD member Carol Hargreaves tries to stay positive

2016

• December: New EWGPWD member Idalina Aguiar introduces herself and tells us about her recent trip to 26AEC in Copenhagen
• November: New EWGPWD member Amela Hajrić introduces herself and tells us what’s happening in Bosnia and Herzegovina
• November: New EWGPWD member Carol Hargreaves introduces herself and writes about her diagnosis
• November: 26AEC Copenhagen - a travel diary by Idalina Aguiar, EWGPWD member from Portugal and her daughter Nélida
• October: Helen Rochford Brennan, EWGPWD Vice-Chair, gives moving acceptance speech on behalf of group for Mano Amiga award
• September:Agnes Houston, EWGPWD Vice-Chair, co-hosts Scottish Conference Gov.Connect.
• September: Helga Rohra, EWGPWD Chairperson, writes about being patron of “Move for Dementia” event.
• August: Hilary Doxford, EWGPWD Vice-Chair, writes “A new (un)diagnostic tool?”
• August: James McKillop publishes booklet on driving with dementia
• June: Nina Baláčková, member of the EWGPWD, tells us about "The Potato Soup"
• June: Agnes Houston, EWGPWD Vice-Chair discusses dementia and sensory challenges on Australian TV
• May: Nina Baláčková, member of the EWGPWD, reports on her experience of ADI’s 31st conference.
• April: Karin Gustafsson, member of the EWGPWD, writes about her Alzheimer's diagnosis.
• March: Helen Rochford Brennan, EWGPWD Vice-Chair says “Terrorism failed to prevent the EWGPWD from completing its work”.
• March: Agnes Houston, EWGPWD Vice-Chair, writes about her experience in Brussels for the AE newsletter.
• February: Nina Baláčková, member of the EWGPWD, writes about the Prague Memory Festival.

2015

• December: Helga Rohra, Chair of the EWGPWD writes about a German initiative to combat loneliness at Christmas.
• November: Hilary Doxford, EWGPWD Vice-Chair writes “A month in the life of a volunteer”
• October: Helen Rochford Brennan, EWGPWD Vice-Chair writes about why the group thinks our Glasgow Declaration is so important.
• October: Agnes Houston, EWGPWD Vice-Chair, writes about her "Dementia and Sensory Challenges project" for the AE newsletter.
• September: The "Letters to Remember" project by The Alzheimer Society of Ireland marked World Alzheimer's Awareness Month.
• September: Alv Orheim, EWGPWD member, writes about the 25th Alzheimer Europe conference for the AE newsletter.
• June: Mojca Hladnik writes about her husband Matjaž Rižnarič being diagnosed with dementia at age 42, just after the birth of their first child.
• March: EWGPWD member Raoul Gröngvist and his wife and caregiver Milja Ahola share their experiences with movement recall and musical therapy.

2014

• June: Jean-Pierre Frognet, Vice-chair of the EWGPWD, living with dementia in Belgium, writes about his “trial period” in a day care centre.

2012

• April: Philip C. writes about the challenges of caring for his wife Carmen as she developed dementia.
• February: Ramona Amariei describes four years of caring for her mother, who lives with Alzheimer's disease.

2011

• June: Paola describes her life since she was diagnosed with dementia.
• March: Helga Rohra reminds us that life is beautiful, even with dementia.

2010

• September: James McKillop talks about the difficulties of driving after developing dementia.
• April: A carer from Spain describes his experience of caring for his wife who had dementia.

2009

• December: Hasse and Birgitta Hansson describe their experience of living with dementia in Sweden.
• May: Stewart Cooper describes his life with Alzheimer's disease in his adopted country of Luxembourg.

2008

• December: Roger Newman, co-founder of the Lesbian, Gay, Bisexual and Transgender (LGBT) Support Group of the Alzheimer's Society, talks about what can be done to ensure inclusion and diversity.