Category Archives: Younger Onset Dementia

DAI celebrates 7 years, by John Sandblom

John Sandblom, USA

In this video, co founding member John Sandblom who lives in Iowa shares his impressions as a co founding member, as DAI celebrates the first 7 years of its life as a registered charity, providing support and advocacy for the 50 million people estimated to be living with a diagnosis of any type of dementia.

Dementia Alliance International (DAI is a non-profit group of people with dementia from around the world seeking to represent, support, and educate others living with the disease that it is possible to live more positively than advised with dementia. It is an organization that promotes a unified voice of strength, advocacy and support in the fight for individual autonomy, improved quality of life, and for the human and legal rights of all with dementia and their families.

Donating or partnering with us will make a difference to the lives of people with dementia: https://www.dementiaallianceinternational.org/donate-or-partner/

Membership of, and services provided by Dementia Alliance International is FREE, and open to anyone with a diagnosis of any type of dementia.

Join DAI here: www.joindai.org

Read our newsletters or regular blogs, by subscribing here: www.dementiaallianceinternational.org

I’M Still ME, by Emily Tan Tan Ong

I’M Still ME

By Emily Tan Tan Ong

For people living with a progressive condition for which there is no cure like dementia, a diagnosis of this nature is a devastating and life-changing experience. The impact is even more when it comes to younger people diagnosed with young-onset dementia.

These individuals often found themselves in “forced retirement” upon disclosure because of the societal perception of incapacity, the BPSD stigma, and discrimination against dementia. Given the overwhelming impact of the diagnosis, it is no surprise that everyone with a diagnosis of dementia struggles to find a way to live a meaningful and purposeful life even after the initial impact.

Rebuilding a life with a diagnosis of dementia is indescribably challenging, and it is made even more difficult by the misconceptions, connotations that come with the label of “old people sickness” and a blame discourse that the onset of Vascular Dementia, as a function of individual behavior (Peel, 2014). The process of “recovery a life” (Deegan, 1988) and reinventing is deeply a personal and individualized journey of growing within and moving beyond what has happened. While there is no set formula for this process, and everyone has to find their ways to live a meaningful and purposeful with dementia, society can do its part in lightening the load shouldered by those living and affected by the diagnosis. Myths and misconceptions surrounding dementia influenced the way people think, talk and treat individuals diagnosed and living with the condition.

Many people with dementia still have a strong sense of who they are and what matters in their life. “I’m still me” even though the brain no longer functions like it used to be. Society needs to see and accept deviation from norms as something nothing to be fearful of and discriminated against. Dementia does not change the core of what makes an individual. The values, beliefs, meanings in life, accumulated experience remain with the person.

There is a saying, “Dementia does not rob the dignity of a person” holds.

Often, the changes happened because the brain is changing and thus, it affects how a person experience, perceive and interpret the environment. It is like how age affects the speed of processing, learning and sharpness of thought. With that understanding society becomes more forgiving, accepting and accomodating to elderly. Likewise, the same approach can be applied to those living with dementia. Dementia is not a mental illness but a neurocognitive disorders like ADHD, Autism. It is progressive and terminal degenerative condition that has no cure at present and no such thing as remission like in cancer disease.

As a person living with young-onset dementia, my request to you, readers:

1) Get to know dementia through courses or spend time with people with dementia

2) Understand that living with dementia is like driving through a thick fog. It takes courage and much effort to find the fog lights to make their voice and presence ‘visible’ to other people.

3) Instead of seeing people living with dementia nothing more than Behavioral and Psychological Symptoms of Dementia (BPSD) turn it around and ask yourself, “What is the person trying so hard to say?” When you understand the underlying cause and provide the appropriate accommodation, you will notice that the person with fog lights. We need others to provide the lights and light up the path . We need your support to live positively in the community. We can’t do it alone, just like you can’t use the fog lights to light up your way other than to make yourself visible to others on the road.

References

Deegan, P. (1988) Recovery: The lived experience of rehabilitation. Psychosocial Rehabilitation Journal. 11: 11-19

Peel, E. (2014) The living death of Alzheimer’s versus ‘Take a walk to keep dementia at bay’: representations of dementia in print media and carer discourse. Sociology of Health & Illness. 36(6), 885-901

 

Dementia and Employment, by Emily Tan Tan Ong

Dementia and Employment: Give us a chance to remain employed

By Emily Tan Tan Ong, DAI Member living in Singapore

Living with neurodegenerative disorders like dementia does not mean individuals suddenly lost their functional capacity and work skills upon diagnosis.

Unless it is Rapid Progressive Dementia, many of us continue to live well for a very long time as long as we do our part to stay physically fit, mentally active, socially engaged, and eat well.

However, there is one aspect of positive living that we need support and understanding from society. “Forced” retirement is the hardest blow to us with young-onset dementia. Many diagnosed with YOD have to quit because of their cognitive decline in particularly executive function skills.

There will be certain aspects of the functional capacities, which are no longer able to function at an optimal level. Skills like planning, time management, being organized, multitasking are commonly affected by cognitive deterioration. While it does impacts an individual’s productivity, efficiency, and effectiveness as a worker, the skills and experiences can compensate for functional declines.

The term “workability” refers to the relationship between an individual’s resources and job scope. According to the work ability model by the Finnish Institute of Occupational Health, there are four interrelated tiers: with a base layer consisting of personal health and functional capacities; the next layer is competence and skills; followed by the third layer personal values, attitudes, and motivation; and the topmost layer is work, referring to work scope, work environment, organization, and leadership.

Hence, it would be useful for any workplace to consider and decide the kind of work intervention needed to keep their employees living with mild cognitive impairment (MCI) or young-onset dementia (YOD). Beyond economic benefits, retaining the occupational role is vital to provide a sense of purpose in life and maintaining self-worth.

For this to work, the collaboration between the affected employee and the Human Resource Department is crucial. The employee has to feel safe enough to disclose the level of functional capacity without being discriminated against and judged.

The negative attitudes, which often based on stereotypes and myths, include people with dementia are unteachable and burdensome to have further worsened the employment situation. This perception can influence management decisions and implications for employee retention and retraining for job fit.

With an inclusive work culture and willingness to support affected employees to maintain their workability, this is a feasible practice. It is also a vital public health policy for the government to work on with the increasing cases of young-onset dementia over the years.

Reference:

Keeping people with dementia or mild cognitive impairment in employment: A literature review on its determinants by Fabiola Silvaggi et al., International Journal of Environmental Research and Public Health, 29 January 2020.

Webinar: Living with Dementia – Supporting Those Who Have It & Care Partners

You are invited to join us for our next “Meeting Of The Minds” Webinar, Living with Dementia: Supporting Those Who Have It & Care Partners, presetned by Laurie White, who has a Masters of Social Work, MSW, and has been a Dementia Specialist for 35 years.

Living with Dementia: Supporting Those Who Have It & Care Partners

Presented by: Laurie White, Master of Social Work (MSW) and Dementia Specialist for 35 years

DAY/DATE(S):

  • Wednesday, February 24, 2021 (USA/CA/UK/EU)
  • Thursday, February 25, 2021 (AU/NZ/Asia)
  • Please note this is one event, set in a number of different time zones.

About the Webinar: Using real life (anonymous) experiences of people with dementia, family care partners and professionals working in the medical and social service arenas, Laurie will help participants:

  • Understand what it feels like to have dementia
  • Connect with a person with dementia through effective communication strategies in the early, middle, and late stages
  • Explore how building on old strengths and interests can bring meaning to people in all stages of dementia

About Laurie White: After Laurie received her Master of Social Work from the University of Michigan 35 years ago, she dedicated her career to helping people with dementia, their care partner(s) and health care professionals. Laurie developed one of the first early stage groups in the country for people with dementia and facilitated these groups for 20 years. She has presented at conferences nationwide to help care partners understand and cope with the common challenges, changes and choices during the course of dementia. She co-authored Coping with Behavior Change in Dementia and Moving a Relative & Other Transitions in Dementia Care. (Dementiacarebooks.com) Laurie lives in Santa Rosa, California.

Wednesday, November 25, 2020 (USA/CA/UK/EU):

  • 1:00 pm Pacific
  • 2:00 pm Mountain
  • 3:00 pm Central
  • 4:00 pm Eastern
  • 9:00 pm London/Glasgow/Dublin UK
  • 10:00 pm Paris, Munich, Amsterdam, EU

Thursday, November 26, 2020 ( AU/NZ/ASIA):

  • 5:00 am Perth, AU/Taipei/Singapore
  • 7:00 am Brisbane, AU
  • 7:30 am Adelaide, AU
  • 8:00 am Sydney/Melbourne/Canberra/Tasmania/Brisbane, AU
  • 10:00 am Auckland, NZ

The Webinar runs for up to 1.5 hours.

Check your time if not listed above with this link.

Register here…

COST TO ATTEND:

  • DAI Members: FREE
  • Care partners of DAI Memers: FREE
  • Healthcare professionals: FREE
  • Researchers: FREE
  • General public: FREE

YOUR DONATIONS SUPPORT US IN MANY WAYS:

  • $US 5.00 covers the average cost of one of our monthly bank fees
  • $US 120.00 covers the average monthly cost of the MailChimp subscription
  • $US 200.00 covers the cost of our monthly Zoom subscription fee
  • $US 300.00 covers the current cost of 3 months of website management fees

Supporting DAI directly supports people with dementia:

We look forwawrd to seeing you soon.

THANK YOU!

Introducing our new Chair, Alister Robertson

Alister Robertson, NZ

As we celebrate our 7th birthday this week, we are also delighted to introduce Dementia Alliance International (DAI) member Alister Robertson as our new Chair.

Alister has been a member since 2016, and has recently stepped down as our Vice Chair, to take on the role of Chair.

We are truly delighted to introduce Alister Robertson as our new Chair to  you. Alister has been a member of Dementia Alliance International (DAI) since 2016, and has recently stepped down as our Vice Chair, to take on the role of Chair.

Alister is taking over from Kate Swaffer who continues as a board member, and the CEO.

About Alister: Alister’s new leadership role has been endorsed and welcomed by the Board of Directors and by our members, and is recognition of the hard work Alister has done globally for our members, and in New Zealand where he is on the Board of Alzheimers New Zealand and a member of their Advisory Group.

He has a strong commitment to supporting people with dementia to have a voice, and to be included locally, nationally and globally.

Alister 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 four 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, which they sold four years later.

They then moved to Napier, Hawkes Bay (2013) to be closer to their son and his family. They had a retail and café business until Alister’s dementia diagnosis.

Alister’s father had Alzheimer’s and Alister was diagnosed with younger onset Alzheimer’s in 2014, aged 60 years. He endeavours to follow the advice of trying to maintain a healthy brain by way of diet, remaining socially involved, good sleep, staying mentally active and exercise. Alister is a keen cyclist, which is his main mode of transport and this helps keeping him fit.

Alister participates in the various activities provided by DAI and would like to see more Kiwi’s become active members of DAI, as well as more people with dementia globally to join for peer-to-peer support, and to get involved in the global work done by DAI.

Help people with dementia to continue to be included, to be supported and to have a voice, by donating today. 

Thank you.

Amy Shives speaks about stigma at 2015 Alzheimer’s Forum

Amy Shives is one of the eight founding members of Dementia Alliance International, and one of the first people with a diangosis of dementia to speak at an Alzheimers Society conference. In 2015, she gave an important presentation on her diagnosis, and on stigma. As Dementia Awareness Month 2020 is coming to a close soon, we have decided to highlight two of our founding members, starting with Amy.

Amy says she hopes to dispel some of the myths of this disease; she has dementia, of the Alzheimer’s type  – A-typical, and she says she  has never been typical in her whole life, so she is comfortable with this diagnosis! It seems most people with dementia are not typical, as everyone experiences it differently. She also asks not to be labelled as a sufferer.

You will not be sorry you watched this brilliant and extremely entertaining short presentation.

Thank you Amy, for being a founding member of DAI.

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organization.

With more than 50 million people living with dementia, and the Coronavirus pandemic causing everyone to operate in a virtual world, our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank you.

Help more people with dementia like Amy to continue to have a voice, by donating to DAI.

 

DAI Masterclass 2: My conversation with my doctor

 

 

During September in 2012, DAI hosted four Masterclasses, and to change the pace a little this year for our daily #DAM2020 blog series, on Day 28 of Dementia Awareness Month 2020, we are posting the second one, which is about the conversation with your doctor, when you are worried about cognitive changes.

Included on the panel are two medical doctors, Dr Jennifer Bute and Dr David Kramer, who were both working as medical doctors when diangosed with dementia.  Much of the advice is still extremely relevant to getting a diagnosis today, but it is also very useful advice once diagnosed, for all follow up appointments.

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organization.

With more than 50 million people living with dementia, and the Coronavirus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Support DAI to host more webinars like this, by donating today.

Graeme Atkins shares his songs on YouTube

 

 

Graeme Atkins is the 2020 winner of the Richard Taylor Advocates Award, and on Day 27 of Dementia Awareness Month, we are privileged to  highlight some of the songs Graeme, with the support of his wife Susan, has composed and performed.

Graeme was diagnosed with Younger Onset Dementia in 2009, and he says ‘his dementia story’ is actually ‘our dementia story’, as it is his partner Susan’s story as well. DAI is delighted to share two his songs with you here today. You can also read a more detailed blog about his story here, an Interview with myself.

Thank you Graeme. We are so glad  you found DAI.

Al Zheimer’s, by Graeme Atkins

Song for DAI, by Graeme Atkins

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton.

With more than 50 million people living with dementia, and the Coronavirus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Help more people diagnosed with dementia like Graeme by  supporting DAI.

Bill Yeates shares why he is glad he found DAI

On Day 26 of Dementia Awareness Month 2020, Bill Yeates shares with us why he is glad he found DAI. Thank you Bill, we are all glad you found DAI too.

My name is Bill Yeates and I live on the northern beaches in Sydney, Australia. I was diagnosed with Younger Onset Alzheimer’s Disease last year, at the age of 59.

As devastating as this diagnosis was, it has also opened my eyes, as I now need to create a new life based on new dreams and new hopes for the future.

I am glad that I found DAI, because without their support and encouragement, I doubt whether I would have had the strength, motivation and will power needed to make this journey. In saying this, I believe that there is something very special in being able to talk freely with other DAI members, about the challenges, issues and demands that we face on a daily basis.

To me, it’s like being amongst your closest friends – where everyone is non-judgemental, great listeners and full of compassion.

It reminds me of a definition of a true friend that I recently came across.

Someone who has your back, no matter what happens.

I am glad that I found DAI because I have learnt that being an advocate is more than just telling your story. For me, it’s also about creating an awareness and acceptance in our community and fighting for the rights of people with mental illnesses, such as Alzheimer’s Disease and dementia, on a national and global scale. Of which DAI has an outstanding record, that is internationally recognised.

Finally, I am glad that I found DAI because through my involvement in the Brain Health group, they have been instrumental in motivating me to create my own strategy, in terms of how I can manage my Alzheimer’s Disease on a daily basis.

Based on the concept of positivity, and using the dimensions of Brain, Heart, Mind and Soul, I have created my own ‘leaves of positivity’ which represent the actions and changes to my life that I have made. When joined together, they form my Tree of Awakening your Positivity.

As a DAI member, if you are interested in learning about this approach, please go to my website… 

Thank you for taking the time to listen to my story about why I am glad that I found DAI. I hope that this important month of September, brings everyone, alot of hope, joy and happiness for the future.

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton.

With more than 50 million people living with dementia, and the Coronavisus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Help more people  like Bill by  supporting DAI.

Jane Callachan shares why she is glad she found DAI #DAM2020

DAI member Jane Callachan lives in Salem, Massachusetts and as part of our Dementia Awareness Month series of vlogs/blogs, shares why she is glad she joined DAI. It is already day 20 of this campaign, and we hope you are enjoying hearing from our members…

Jane was diagnosed with younger onset dementia aged 55, and she regularly joins the Friday afternoon DAI peer to peer support group. One of the best things about these groups, Jane said, is that she can join online, and doesn’t have to drive to one!

DAI has helped help Jane feel much more independent, and has introduced her to others who are living positively, in spite of dementia. “DAI really does make a difference”.

Thank you Jane. We are glad you found DAI.

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton.

With more than 50 million people living with dementia, and the Coronavisus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Help more people like Jane today, by  supporting our Virtual Art Auction.