2018 Board of Directors

Chair and CEO: Kate Swaffer, AU (co-founder)
Vice Chair: Jerry Wylie, USA
Treasurer: John Sandblom, USA (co-founder)
Secretary: Eileen Taylor, AU

Phyllis Fehr, Canada
Maria Turner, USA
Agnes Houston MBE, Scotland
James McKillop MBE, Scotland
Bill Turner, Australia
Alister Robertson, New Zealand
Carole Mullikan, USA

Co-opted Board member
Ian Gladstone, Australia

2018 Elected BOD Biographies

On November 14/15, 2017 we held our third Annual General Meeting, including voting in a new board for 2018. We welcome them to the board, and introduce them to you here; you can read their biographies below. Thanks also to our past 2017 Board members and co-opted board members for their time, commitment and hard work, all of which benefits the whole global dementia community. As you will read, our new board members are very talented, and have much to contribute to DAI.

Kate Swaffer Co-founder, CEO and Chair, AU
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. Kate also writes a regular blog, currently with thousands of 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.

Jerry Wylie, Vice Chair and Board member, USA
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.

John Sandblom, Co-founder and Treasurer, USA
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 and Board member, AU
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 Kate Swaffer, which she attends regularly, and “enjoys the camaraderie of the group.” She continues to enjoy the challenge of being the 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; Advocate; Ontario Dementia Advisory Group, past 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, USA
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, Board member, Scotland
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.

James McKillop MBE, Board member, Scotland
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.

Carole Mulliken, Board member, USA
Carole Mulliken’s interest in brain function began in the early seventies when she worked as a high school writing teacher. A district teacher training workshop she presented in the seventies concerned brain hemisphericity and writing: “Right! Left! Right: The Muse Goes to Bootcamp.” This became the title of a nationally distributed exemplary curriculum for middle and high school writing instructors. Thereafter, she became an educational consultant for the U.S. Department of Education, Office of Educational Research and Improvement (OERI).

Carole Mulliken is a DAI member and a founding board member of the Dementia Advocacy and Support Network International (DASNI), DAI’s predecessor. DASNI was the first international online support group for people of dementia. She hosted a daily message board with archives exceeding 35,000 messages. DASNI member, Lisa Genova, Ph.D., author of Still Alice, acknowledges DASNI and Carole Mulliken as contributing to her understanding of the lived experience of dementia.   She served on her city’s AA chapter fundraising committee, spoke at an Alzheimer’s Foundation of America (AFA) national conference, organized a DASNI reunion for thirty-five members from three countries, hosted hospitality rooms for Saint Louis Alzheimer’s conferences, presented to local MDs, and published an article for an AFA magazine.

Earlier, Carole also served as a school counselor, a suicide crisis interventionist, an adjunct professor of composition online, and a freelance writer. She wrote and published a monthly online newsletter for an animal shelter and maintained its adoption website. Her freelance feature articles have appeared both in print publications and websites. With multi infarct dementia well over twenty years old, she regards dementia advocacy as a second, if unpaid, career and herself a veteran of the dementia wars. She lives near Saint Louis, MO.

Alister Roberts, Board member, NZ
Alister Roberts graduated from Lincoln University, Canterbury New Zealand in 1978 with Bachelor Agricultural Commerce. Spent the following 30+ years in the rural finance sector lending money to the primary sector.

In 2009 Alister and his wife, Charlene decided they would like to do something together, given their 4 sons had finished their schooling and were doing their own thing. Alister and Charlene resigned from their respective jobs, sold their newly built home and purchased a Motel in Taupo. It was run down and they built the business back up and sold it after 4 years.

they then moved to Napier, Hawkes Bay (2013) to be closer to their son and his family. They looked initially to buy another Motel business but didn’t find anything suitable and found a Garden Centre with Cafe, again where the business was run down. Charlene ran the Cafe and Alister ran the Garden Centre.

Alister’s father had Alzheimer’s and Alister was diagnosed with younger onset Alzheimer’s in 2014, aged 60 years. In 2016 they sold the Cafe as Charlene ended up having to run both businesses. Alister still assists at the Garden Centre 4 days a week (doing as he is told, sometimes) carrying out tasks like watering and unloading stock when it arrives. They are currently in the process of getting the business ready to sell.

Following Alister’s diagnosis he is fortunate enough to attend a day programme run by Dementia Hawkes Bay, two days a week. Alister has become an active member and advocate for raising awareness of Dementia. Three months ago Alister was invited to join a Consumer Advisory Group for Alzheimer’s New Zealand. This has since lead to him being involved in preparing a briefing paper to the newly elected Minister of Health on Dementia, contributing to the development of the Alzheimer’s NZ Dementia Services and Standards, a working group member to develop Dementia Friends program for NZ and committee member organising the next Alzheimer’s NZ Conference in 2018.

Alister joined DAI in 2016 and participates in the various activities provided by DAI and would like to see more Kiwi’s become active members of DAI.

Ian Gladstone, Co-opted Board member, AU
Ian was born in Adelaide in 1948. He commenced his working life as a Police Officer with SAPOL after having graduated from the Fort Largs Police Academy in 1968. He spent 16 enjoyable years as a police officer before moving on to start a catering company with another ex-police officer, until selling the business (which still is a viable business today) and taking on many roles in a variety of industries.

Ian also wrote and presented a school program for children in the mid west of the U.S.A, called “A day in the life of an Australian”. He has been involved in the security industry and owned his own private investigation company in South Australia. He has also studied in the U.S. and Germany in the petroleum industry, in the area of underground fuel storage. Ian has accomplished much more in his working life and he’s held senior management roles in latter years. After returning to Adelaide from New South Wales in 2004 he was working in retail management when he suffered a ‘stroke like’ neurological event, from which he recovered very quickly.

As a result of this his neurologist observed him for a number of years with tests and MRI scans. It was then that Ian was diagnosed with Semantic dementia at the age of 58 years and his life was transformed from then on. He has become one of the most active advocates on Younger Onset Dementia and Dementia Friendly Communities in South Australia. He also is a member of an International support group called Dementia Alliance International. He travelled widely throughout the State and beyond as a volunteer speaker with Dementia Australia S.A. and retired in 2017 as Chair of AADAC (previously know as the Alzheimer’s Australia Dementia Advisory Committee).

Ian lives alone in a unit in Campbelltown and enjoys life to the fullest. His sister Anne is his carer and she lives nearby, and will always tell people with dementia… You have two choices after diagnosis, “YOU EITHER MOPE OR COPE”.

He strongly believes that if you find someone who hasn’t got a smile on their face….give them one of yours !

William (Bill) Turner, Board member, AU
Bio currently unavailable

 

Of, By, and For People with Dementia

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