Chair and CEO: Kate Swaffer, AU (co-founder)
Vice Chair: pending
Treasurer: John Sandblom, USA (co-founder)
Secretary: Eileen Taylor, AU
Phyllis Fehr, Canada
Maria Turner, USA
Agnes Houston MBE, Scotland
David Paulson, USA
James McKillop MBE, Scotland,
Brian Le Blanc, USA
New co-opted Board members (bios to be added ASAP)
Jerry Wylie (USA)
Valerie Schache (AU)
Bill Turner (AU)
2017 Elected BOD Biographies
On November 15/16, 2016 we held our Annual General Meeting, including voting in a new board for 2017. In this, our first Annual Report, we welcome them and introduce you to our new members and thank them for being willing to join the Board of Directors. We feel proud and honoured they have continued on as past members, or joined as new Board members. This was the first time we have more nominations than vacancies, although recently we have had three resignations and are about to vote to co-opt three new board members at our May Board meeting.
Kate Swaffer Co-founder, CEO and Chair, and 2017 SA Australian Of The Year
Kate is the current Chair and Chief Executive Officer, and a co founding member of DAI. She is also a member of the World Dementia Council, a board member and the SE Asia Regional Ambassador of Alzheimer’s Disease International, and the inaugural Chair of the Alzheimer’s Australia Dementia Advisory Committee which she founded. She is a Humanitarian, advocate and activist for people with dementia, a widely published academic, author and a poet. Her fist book on dementia, What The Hell Happened to My Brain?: Living Beyond Dementia, was released in 2016, and her second book, Diagnosed with Alzheimer’s or another dementia, co-authored with Associate Professor Lee-Fay Low was released in September in time for World Alzheimer’s Month 2016. Her first two poetry books were released in 2012 and 2016, and her third one is currently [In Press]. Kate also writes a regular blog, currently with more than 65,000 subscribers, which was archived in the PANDORA Collection of the State (SA) and National Library of Australia in 2012.
Kate Swaffer has made a human rights based approach to dementia, hoping to reduce stigma, and improve the quality of life for the almost 50 million people estimated to have dementia globally; her focus over the last few years and is changing the way the world views dementia and empowering others they can live with dementia, not only die from it. Kate is living beyond a diagnosis of rare form of younger onset dementia, having been diagnosed at the age of 49 in 2008, when she was a married working mother of two teenage sons, also studying a double degree at the University of South Australia. She has a Masters of Science (Dementia Care, 2014), BPsych, BA, former Chef, Graduate Diploma in Grief counseling, and is a retired nurse. Kate is married to Peter Watt, who does a lot of pro bono work for DAI, and they have two adult sons.
John Sandblom, Co-founder and Treasurer
John Sandblom has lived in central Iowa, US all of his life except for college which was eastern Iowa at the University of Iowa. He spent the majority of his working life in business-to- business sales, first print advertising followed by television advertising and then telecommunications sales. He was diagnosed with Younger Onset Atypical Alzheimer’s Disease at the age of 48 in 2007, by a gerontologist that specialized in dementia. He was the same physician that diagnosed his father with Alzheimer’s disease in his early 70’s. He went back through the diagnosis process from scratch at Mayo Clinic in 2009, where he was told it was medically undeniable that he had dementia but they could not tell him what type.
His local neurologist labeled John atypical FTD until November of 2011 when quite by surprise he received the complete research autopsy done on his father’s brain. It showed he died of Alzheimer’s Disease and since it has been believed that he has the same type of dementia that he died from, his diagnosis was changed to atypical Alzheimer’s Disease. John works at the local, regional, state and international levels now to advocate for people with dementia. His work founding support groups comprised solely of people living with dementia is the achievement he is most proud. John is currently the Treasurer, for his second year.
Eileen Taylor, Secretary
Eileen Taylor was diagnosed with a Genetic younger onset Alzheimer’s Disease in 2008 aged 58 and has been involved in medical trials for Alzheimer’s Disease ever since. She lives in Brisbane, Australia with her husband, Doug and one toy poodle puppy. She is also a mother and grandmother. Eileen has a background in disability, rehabilitation, and counseling. She worked as a counselor / social worker with adults and children in a community based service for nearly twenty (20) years before retiring in July of 2015. She recently completed University of Tasmania’s MOOC on line course and has enrolled in their Bachelor of Dementia Care for 2016.
She likes to keep abreast on the latest news in the dementia world including any new research projects through Twitter and Facebook. Her hobbies include reading and patchwork and quilting. She is involved with the online support group in Australia co hosted with Mick Carmody, which she attends regularly, and “enjoys the camaraderie of the group.” She continues to enjoy the challenge of being the new DAI secretary and being more involved with the DAI’s goals and its members.
Phyllis Fehr, M.L.A., R.N., S.A.N.E.; Board member, Dementia Alliance International, 2017; Advocate; Ontario Dementia Advisory Group, Board member and Vice Chair.
Phyllis Fehr was given a working diagnosis of early-onset Alzheimer’s along with Lewy Body dementia; she was 53 years of age at the time. Phyllis was working full time in the intensive care unit as a registered nurse. On her days off she worked on call as a sexual assault and domestic assault nurse examiner. She is also a mother and grandmother. Phyllis promotes the abilities of people living with dementia by advocating for people living with this disease both locally and nationally.
She advocates change for persons with dementia as an Ontario Dementia Advisory board co-chair with a focus on government policy. Phyllis is on a number of boards and steering committees, including membership on the Advisory Group for the Ontario Dementia strategy and the Early Stage Working Group. She is an active board member for the Dementia LHIN board for HHNB; the Canadian Dementia Priority steering committee and numerous others. She is also a valued volunteer at her local Alzheimer Society for program planning and implementation. Phyllis is a popular guest speaker at a variety of events from a lived experience perspective, educating about stigma of dementia.
Maria Turner RN (retired), BSN; Board member, Dementia Alliance International, 2017
Maria lives in Greenville, SC, but is originally from Wales UK. She was diagnosed with the PPA or a non- behavioral variant of Fronto Temporal Dementia on April 1, 2016 and MND/ALS at Duke University Medical Hospital shortly after. She was then 48 years old. After many rounds of tests and misdiagnoses, she was told that she could not return to her beloved nursing career, but should go home, live every day, and get her affairs in order. After the initial shock, denial, and anger, she began to research and find out about this disease and how to live with it, but not be defined by it. Six weeks after diagnosis, Maria attended the AFTD Education Conference in Minnesota. This was a life changing experience for her. She was introduced to many amazing new friends. She laughed, cried, got lost, and met a whole new group of friends, allies, and family. She then got the confidence to message Kate Swaffer who, to Maria’s surprise, messaged back and introduced her to Dementia Alliance International and Mick Carmody. Finding and attending online support meetings helped her see that suffering from and living with FTD are two very different things.
Maria wants to use her 30 years of nursing experience to help people who may not have as many resources as we who are currently reading this. Her passion is to see a stronger, more inclusive community through outreach to those newly diagnosed. Despite all the challenges she is now navigating through herself, she knows that there are many reasons to plan for and be excited about one’s future even after diagnosis. “If I can walk alongside just one person and prevent them from having to go it alone, I will know that I had a part in breaking down barriers and helping end the stigma of dementia.” DAI is thrilled she has joined the board, and will be taking on an active role supporting new members.
Agnes Houston, MBE
Agnes Houston MBE was diagnosed with younger onset Alzheimer disease in 2006 at the age of 57. She is a current board member of Dementia Alliance International, an exchange fellow of Edinburgh University, an active member of the DEEP network, a current committee member of the SDWG and a Director of Dementia friendly communities in the rural Highlands of Scotland.
She has campaigned for best practice in Dementia care and improving lives of People with Dementia especially on sensory issues, resulting in a booklet and DVD on Dementia and Sensory Challenges in 2015 She received a lifetime achievement award from Alzheimer Scotland in 2013 Was awarded an MBE in 2015 and a Churchill Fellow in 2016.
David L. Paulson is a new DAI Board Member, and holds a PhD in Linguistics, MS.Ed. in Foundations of Education, and a BA in Spanish Business & Translation. David holds an Advanced Certificate in Second Language Acquisition / Teacher Education, is a member of several academic honor societies, has co-published several textbooks, speaks a number of languages and was a classical pianist before his illness. Paulson currently teaches in Spanish and is the French/Spanish Translator/Interpreter and Hispanic Student Retention Specialist at his institution.
David noticed emerging symptoms of cognitive impairment in his mid 40s, and by in his 50s, he retired early with a misdiagnosis of mental illness. Two years later, re-diagnosed with Dementia, likely of the Alzheimer variety, he has resumed his academic duties at a community college and remains professionally active in the promotion of multilingualism, English as a Second Language, The Teaching and Learning of Hispanic Cultures and their associated Indigenous Languages and Cultures, as well as Professional Spanish Translation and Interpretation. Paulson also invests much of his time in Advocacy for Persons with Dementia in the Americas. Paulson holds a PhD in Linguistics, MS.Ed. in Foundations of Education, and a BA in Spanish Business & Translation. He holds an Advanced Certificate in Second Language Acquisition / Teacher Education, is a member of several academic honor societies, has co-published several textbooks, speaks a number of languages and was a classical pianist before his illness. Paulson currently teaches in Spanish and is the French/Spanish Translator/Interpreter and Hispanic Student Retention Specialist at his institution. We are thrilled to welcome David onto the board.
“My immediate future vision for DAI is to bring the Zoom support system to the Hispanic World (20+ counties) in General American (Guatemalan) Spanish Dialect, comprehensible to the vast majority of world speakers of Spanish. This will bring needed support and vital information to persons with dementia PWD as well as their caregivers. A broader vision will be to record and catalog videos of PWD from the Hispanic world as well as other languages and cultures throughout the world who step forward to talk about the experience of dementia in their own communities, countries and cultures. These voices can then be used to form a document of anecdotal evidence to inform the WHO of the reality of dementia in the world.”
Brian Le Blanc, National Public Speaker, Advocate, DAI Board member
Brian is a new Board member and a Retired Public Relations / Marketing Executive from Pensacola, Florida who has been living with Early (younger)-Onset Alzheimer’s Disease since 2014. He volunteers his time speaking throughout the United State, as well as in my local area, about all things Alzheimer’s and Dementia Related. In the State of Florida, he is Representing Individuals Living with Alzheimer’s or other Dementia-Related Illnesses in the Dementia Care and Cure Initiative (DCCI) Statewide Taskforce – Tallahassee, FL.
Brian is a Public Speaker, Advocate and on the Leadership Board of the Covenant Care, Corp – Pensacola, FL. Brian is also a Pubic Speaker, Advocate, and a member of the Advisory Council with the Dementia Action Alliance – Falls Church, VA. He is a Public Speaker, Advocate and on the National Early-Stage Advisory Group for the National Alzheimer’s Association – Chicago, IL, and a member of the National Early-Stage Advisory Group Alumni, as well as a Public Speaker, Advocate and on the Executive Committee for the Alzheimer’s Association AL/FL Panhandle Chapter. His certifications include: Alzheimer’s Association, 1) Know the 10 Signs: Early Detection Matters and 2) The Basics: Memory Loss, Dementia and Alzheimer’s Disease. Brian’s was educated at the Archbishop Rummel High School, Delgado Community College, and the University of New Orleans. We are thrilled to welcome him onto the board.
James McKillop MBE
James McKillop was born in Wishaw Lanarkshire, Scotland in 1940. He leads a normal life, attended primary school, secondary school and had a job in the civil service. until 1973. He is married and his first of four children, followed in 1977. James and his wife had a normal family life on a low income, and spent all their spare time bringing up the children, taking them out whenever possible. After the first child they had to give up a car and did not have one for another twenty years.
In the mid 1990’s, he started to have severe difficulties at work and in the home. Family life was badly disrupted as his behaviour had changed, for the worse. James eventually had to give up work as he could no longer cope. Then he was diagnosed with multi infarct dementia; he was devastated as had met it in my working life in huge mental health hospitals. Initially he went into a deep depression and stayed at home, but after some harrowing years and with excellent support he got his life back on track.
James was inspired to start the Scottish Dementia Working Group, a group for people with dementia and led by people with dementia. Professionals and carers had their own groups; this was ours. He has since been very active in the dementia field, giving presentations and writing articles. James’s membership of DAI has brought him into contact with others across the world, and he looks forward to future chats and to participating on the board. DAI feels very lucky to have such a long time pioneering and successful advocate join the board.
Co-opted elected Board members
Jerry Wylie is currently a board member of DAI and on the Physicians Advocacy Committee for the OR Alzheimer’s Association. He has begun speaking to individual Rotary Clubs across Oregon and is being scheduled to speak at the Rotary District Convention in 2018 where he will unveil his “dream”, vision, concept & plans of building an independent living, (Regional) Dementia Village for people living with dementia “prior to needing a memory care home”. He hopes to name it “Integrity Village”. He envisions attractive, affordable, dementia friendly housing, surrounded by shops, stores and garden areas as well as a modern medical clinic that specializes in all diseases of the brain. His dream is that construction can begin by 2019.
Jerry was diagnosed with dementia in 2015 at the age of 62. Prior to diagnosis, his career in construction management began with supply where he eventually specialized in products for repair of bridges, dams, roads and parking garages. He had the honor of working with companies such as Bechtel who is one of the largest in the world. He ended his career in the home building industry. He started a “new” branch in a new territory building homes. In five (5) years he built that branch from zero (0) to 70 houses per year then, dementia struck.
It took Jerry nearly 2 years of grief to finally accept all the various types of loss that comes with a diagnosis of dementia. Today, he and his wife of 43 years (Kathy) are working hard to make a difference and improve the lives of people living with dementia through advocacy.
Human Rights Ambassador
Professor Peter Mittler, CBE, MA, MEd, PhD, C.Psychol., FIASSID, Hon. Research Fellow, Emeritus Professor and former Dean of Faculty of Education, University of Manchester; former President Inclusion International; UN consultant in intellectual disability; diagnosed with Alzheimer’s Disease 2006, living well with dementia. Peter is a global expert in the field of disability and human rights, and currently holds the position of Human Rights Advisor to DAI, although he is not board member. We remain indebted to the work he does for DAI, and for many other groups supporting people with dementia in the United Kingdom and Europe.
Human Rights Advisor
Diane Kingston OBE
Diane Kingston OBE (formerly Diane Mulligan) is a UK-based disability rights campaigner. She is Deputy Director of the International Advocacy and Alliances department at CBM, an international Christian development organisation committed to improving the quality of life of people with disabilities in poor communities. In 2012 she became the UK elected member of the Expert Committee for the UN Convention on the Rights of Persons with Disabilities (CRPD). Diane served as an UN Expert for a four-year term, including two years as an elected Vice-Chairperson. From 2007-2011, she was a member of the World Health Organization’s Advisory Board for Community-based Rehabilitation (CBR), and she was the lead author of that organisation’s CBR guidelines component on education. From 2006-2007, she served on the British Medical Association’s Patient Liaison Group and Equal Opportunities Committee, and had advisory input into two publications: Disability in the Medical Profession (2007) and Disability Equality within Healthcare: the role of healthcare professionals (2007). Diane has been supporting DAI’s work for two years.