On World Alzheimer’s Day 2018, ADI released the World Alzheimer Report 2018: The state of the art of dementia research: New frontiers, addressing key questions in dementia research, relating to: basic science, diagnosis, drug discovery, risk reduction, epidemiology and care. Dr Jennifer Bute, a former General Practitioner (GP) who was diagnosed with dementia, is one of the contributors to this year’s report. Here is her story in her own words. Continue reading “Dr Jennifer Bute: A Journey of Hope”
I started to notice changes around the beginning of 2014. I was working at the local Hospital and I began to forget regular tasks. I would go to the clinic room or kitchen and forget what I went there for. Knowing the time, day and date became an issue and I was getting lost around the Hospital. I began to get lost in other familiar places and would cross roads without looking or noticing until I had got to the other side.
Although I had received Dementia training and experience caring for people living with Dementia for 15 years, I put it down to turning 50 and it wasn’t until I saw a television programme about Chris Roberts, who himself was diagnosed with dementia at 50, that alarm bells rang and I went to my GP (general doctor). Continue reading “Howard Gordon shares his experiences of early onset dementia and offers advice during World Alzheimer’s Month”
On 23 May 2018, Alzheimer’s Disease International brought together government delegates, civil society, students and importantly, people living with dementia and carers, in the Palais des Nations in Geneva, for our official side-event to the 71st World Health Assembly (WHA71).
Mobilising Society: Inspiration for national responses to dementia was a particularly significant event for dementia advocacy and the advancement of dementia on the global agenda, as it was the only event at the WHA this year dedicated to highlighting dementia as a global health challenge. It also marked two important occasions: first year anniversary of WHO’s Global action plan on the public health to dementia 2017-2025, and of ADI’s new report: From plan to impact: Progress towards targets of the Global plan on dementia 2017-2025. Continue reading ““Progress can only happen when there is close collaboration”: ADI at the 71st World Health Assembly”
Rebekah Churchyard, 27, speaks about her relationship with her Grandfather living with dementia, and her passion for new research as a member of the World Young Leaders in Dementia (WYLD).
When you’re fourteen years old, there’s a lot going on. Dealing with fluctuating hormones, emerging personalities and high school doesn’t leave time for much else. I was fourteen in 2003 when my Grandma first told us that my Grandpa was diagnosed with ‘semantic dementia’. She carefully explained that this is a special type of cognitive disorder where he would gradually lose the ability to do things like plan, make decisions and talk.
My Grandpa was a well-known teacher in Fergus, Ontario, Canada. His career path was one of the two stories he would always tell; “Did you know I was a teacher? It’s funny because I never wanted to be a teacher…”, he would say.
To generate extra income for their retirement, my grandparents operated a Christmas Tree Farm. They become well known and loved community figures. Grandpa would spend his days on his tractor in the fields, pruning and baling trees. They had planned to travel in their retirement as a reward for decades of hard work. We knew things would change the day he put water where oil is supposed to go in his chainsaw. It was scary for my Grandma.
My Grandma did a wonderful job accessing support and resources available to her, especially from the Waterloo-Wellington Alzheimer’s Society. My Grandpa did not enjoy attending Day Programs and Grandma hired personal support workers or asked family and friends to come stay with him. He would regularly greet guests and say with a sigh, “You know my brain’s no good anymore”. At first, I responded with a dismissive yet reassuring “I still love you”. Continue reading “A good decade”
My own personal experience of dementia began when my mother seemed to forget where she had put her things. Initially, we as a family assumed that this was simply a normal part of ageing, but gradually she started forgetting where she was and could not recognize the people around her, often repeating questions that we had already answered.
It was at this stage we realized that this was not a normal part of ageing, so we took her to various doctors for consultations, and she was diagnosed with Alzheimer’s disease. Dementia changed her personality completely, and we didn’t know what to do or how best to support her. It was and still is hard witnessing her decline. I would spend the whole day watching her walk from one room to another, not knowing what she wanted.
She didn’t want people to do things for her because throughout her life, she was someone who was highly organized both in her personal and professional life. She trained as a teacher, becoming a Headmistress and ﬁnally an Inspector. Her personal life was one of reﬁnement in her duties to her family and society. She was softly spoken, articulate, forgiving, and always ﬁnding good in others, seldom criticizing people; instead often invoking Allah to guide that individual. Continue reading “Support in Oman”
As Glaswegian James McKillop strode towards Arrivals in Tokyo airport last November, he read the customs sign. Had he anything to declare? Yes – he had a positive message of hope and the strong belief in the right to live well for almost 5 million people with dementia in Japan.
James – his journey
Now 75, James was diagnosed with dementia at 59. After recovering from the shock and encouraged by staff from Alzheimer Scotland, he realised that he could still lead a fulfilling life. The challenge facing him was to find his voice to express his determination to do so.
Soon, James was talking about his experiences candidly in venues ranging from care homes to conferences. He became a key founder member of the groundbreaking Scottish Dementia Working Group in 2002. The Group, led by people with dementia, works towards making life better for people living with dementia.
James’ journey to Japan started when he met the NHK TV Director Yuji Kawamura in Glasgow. Yuji’s follow-up programme ‘Nothing About Us, Without Us!’ on the Scottish Dementia Working Group had a big impact, as the first Japan Dementia Working Group was formed the following month.
Now James, accompanied and supported by his loyal wife Maureen, was in Japan with his message of hope. He had been invited to appear at two ‘Heart Forums’ in Tokyo and Osaka. The theme on both occasions was ‘A new dawn – people living with dementia mapping out their destiny’. The message from James: to exchange learning and share lived experiences.
Two cultures, one experience
James was soon sharing his personal journey of 15 years living with dementia. Speaking directly, James admitted his initial shock on receiving the diagnosis and the dark days that followed and spoke about the possible roles and opportunities for people living with dementia within their community and in society at large. His audiences in Tokyo and Osaka were deeply moved.
Two founding members of the Japan Dementia Working Group also spoke. First, Tomofumi Tanno, a 41-year-old with a two year old diagnosis of Alzheimer’s disease, provided an almost mirror image of the experiences of James’ own journey. Next, Kazuko Fujita, 54, living with dementia for the past 8 years, said that her initial experiences had been similar. For James, Tomofumi and Kazuko, the months following a diagnosis of dementia were blank and bleak with no support. Such a diagnosis can have a huge impact on people with dementia and families, particularly when the community all around lacks awareness and understanding.
Breaking the silence
Someone in the audience asked, “How did you break through the period of despair and isolation?” Tomofumi said that meeting other people living with dementia gave him hope and purpose, and above all encouraging smiles.
Another person asked how to lead a fulfilling life with dementia. Tomofumi answered: “Once out of the blank period and hopeful of a fulfilling life, it is vital to speak up and speak out. As dementia is not a visible condition, those who live with it have to make their needs known.” James added that his “Helpcard” he carries has been very useful, which states that he is living with dementia and what his needs might be.
Tomofumi created the ‘Orange Door’ in his hometown of Sendai to provide a welcoming meeting place by and for those living with dementia, offering a listening ear, guidance and a sense of hope. Kazuko launched a local support group ‘Clover’ in her region Totorri, working for and with people with early-onset dementia. James co-founded the Scottish Dementia Working Group. Their actions remind us that people with dementia are agents for change and improvement. By cashing in on their lived experience, they are leading the way towards a better life for their peers and a more dementia friendly society by influencing policy.
Dementia – we are all in it together
Kumiko Nagata, a panelist, said that dementia is everybody’s business now. In Japan, 1 in 5 will have had direct experience of dementia by 2025. She emphasised the need for meeting people with dementia, if only to hear their voices and aspirations.
James asked his audiences:
- If your mother developed dementia, how would you like her to be treated by society?
- If you yourself develop dementia at some time in the future, how would you like to be treated by society?
Looking to the future
To James’ astonishment he found that his Japanese peers shared the same experiences, mirroring his frustrations, fears and hopes to create a dementia friendly world, a better life ahead for the current 46 million people living with dementia worldwide – and for the many millions to follow.
By Dr Mayumi Hayashi from King’s College London and James McKillop, who is living with dementia
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