Category Archives: Copyright © 2021

Webinar: LGBTI people Kindness and Dementia by Dr Catherine Barrett

Please join us for the next DAI “Meeting Of The Minds” Webinar, titled LGBTI people, Kindness and Dementia, presented by Dr Catherin Barrett. Dr Catherine Barrett is the Founder and Director of Celebrate Ageing – a not for profit organisation challenging ageism and building respect for older people, and we are extremely honoured and excited to have her join our list of eminent speakers.

DAY/DATE(S):

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

About the Webinar: This presentation will begin by outlining the work of the Celebrate Ageing program, including the Museum of Love – which explores the importance of love in the lives of people with dementia. Then it will outline the key challenges that lesbian, gay, bisexual, trans and intersex (LGBTI) people face when they are diagnosed with dementia – in particular the lack of knowledge and compassion from families and service providers. The presentation will conclude by exploring how the stories of people living with dementia have been embraced by the Kindness Pandemic (a project set up under the Celebrate Ageing umbrella with over ½ million members) and how kindness is changing the way some people live.

About Catherine Barrett: Dr Catherine Barrett is the Founder and Director of Celebrate Ageing – a not for profit organisation challenging ageism and building respect for older people. Catherine has held positions as a nurse in residential aged care and an Academic at University – and draws on these experiences to build evidence-based approaches to engaging the community and service providers in real cultural change. Catherine is passionate about promoting recognition of the human experience of living with dementia.

Wednesday, March 24, 2021 (USA/CA/UK/EU):

  • 1:00 pm Pacific
  • 3:00 pm Mountain
  • 4:00 pm Central
  • 5:00 pm Eastern
  • 9:00 pm London/Glasgow/Dublin UK
  • 10:00 pm Paris, Munich, Amsterdam, EU

Thursday, March 25, 2021 ( AU/NZ/ASIA):

  • 5:00 am Perth, AU/Asia
  • 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.

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

PLEASE DONATE TO DAI OR BECOME AN ASSOCIATE OR PARTNER. WITHOUT THEM, DAI COULD NOT PROVIDE THE SERVICES WE PROVIDE CURRENTLY FOR MEMBERS, THEIR FAMILIES & THE GLOBAL COMMUNITY.

Support people with dementia:

THANK YOU

 

Review of Webinar – Living with Dementia by Bobby Redman

DAI “Meeting Of The Minds” Webinar – Living with Dementia: Supporting those who have it and care partnersby Laurie White.

Review by Bobby Redman, Vice Chair, Dementia Alliance International

Another successful Meeting of the Minds Webinar took place on the February 24th / 25th, with 147 registering to attend.  Although not everyone who registered, made it to the presentation by Laurie White from Dementia Care Consulting, there were 55 attendees, with a good mix of people living with dementia, care partners, health care professionals and researchers.

Laurie’s extensive experience, in working with people with dementia and their families became clear during her presentation: Living with Dementia – Supporting those who have it and care partners. Her perspective showed empathy and insight into the world of people living with dementia and their care partners.

Although we are all aware that peoples’ experience of dementia differs and not everyone thinks and acts in the same way, I could relate to many of the quotes and suggestions made by Laurie. Her focus on the “humanity of the person”, recognising that we all have our own stories and urging carers to put themselves in the shoes of those living with dementia, who may feel that they are still the same inside, was heart-warming.

For me, the recognition that dementia is not all about memory was particularly meaningful, as this is often missed by health professionals, who often fail to identify the real issues because they are constantly measuring for loss of memory.

I also enjoyed her perspective on how to communicate better with people living with dementia, reminding people to meet our personal needs in that area – a true person-centred approach.

Laurie clearly captivated the audience judging by the numerous questions following the presentation. Laurie generously responded to queries, both related to her presentation and the many other questions about unrelated areas, thrown her way.  Without a doubt there are still many, out there, seeking a better understanding of dementia and a practical presentation, such as this, hopefully, provided this, as well as some insightful ideas on providing supportive care.

For those who missed the presentation, Laurie has given us permission to share her PowerPoint.  This is available now, and a recording of the actual presentation, which covers a great deal more that will be available down the track, once edited.

Download Laurie’s slides here.

Donate to DAI today to ensure we can host more free webinars like this for you!

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.