Category Archives: Diagnosis

Dementia and Rehabilitation by Emily Tan Tan Ong

We are pleased to publish the following article written by DAI member Emily Tan Tan Ong on Dementia and Rehabilitation, or rather, the lack of rehabilitation for people with dementia.

Emily mentions in her article that rehabilitation for dementia is not heard of in her country; most other DAI members also report it is unheard of in their countries.

As our CEO Kate Swaffer says: “If we are afforded rehabilitation after a stroke or other brain injury or medical condition, then we have the same right to be after a diagnosis of dementia. It won’t be a cure, and may not even slow the progression, but rehabilition does improve quality of life.”

I keep the patients alive. Rehabilitation gives them Quality of Life. 

(Dr. Tagio Tumas, Ministry of Health, WHO Rehabilitation 2030 Forum, Geneva, July 2019).

Dementia and Rehabilitation, by Emily Tan Tan Ong

With no means to significantly modify the progression of dementia and no cure in the foreseeable future, the rehabilitation approach is an integral part of living positively with dementia.

Rehabilitation, in its essence, is a set of interventions needed when a person is experiencing limitations in everyday physical, mental, and social functioning due to aging or a health condition, including chronic diseases or disorders, injuries, or trauma [1]. It is estimated that at least 1 in 3 people in the world are living with a health condition that would benefit from rehabilitation [2].

Despite this, rehabilitation has not been prioritized and is under-resourced globally.

A possible explanation could be rehabilitation is often perceived as an expensive and specialized service provided at the secondary care level and needed by those recovering from injury or stroke. Hence, the perception that rehabilitation is a luxury health service in addition to primary health care has caused it to be undervalued and ignored when competing demands for resources and investments.

As a result, people living with terminal, progressive health conditions like dementia, which require long-term rehabilitation services, are left behind when rehabilitation is not part of or accessible at the primary health care level.

Earlier on in my journey living with dementia, I was having difficulties with some of the everyday functioning. I was confused at the public transport interchange, overwhelmed with sequential tasks like cooking and baking, and not able to remember the content of the paragraph I just read.

It is like saying, “Sorry too bad you are diagnosed with dementia but there is nothing we can help you to continue living other than attending Adult Day Care Center or Memories Cafe.  One is told that is the way life is going to be, living with dementia, losing one’s functional and cognitive abilities, and independence.

Hence, it is not surprising many newly diagnosed with young-onset dementia go into depression. It is emotionally tormenting to be alive and not able to do things when you still have insights into who you are, what you value, and how you want to live despite dementia.

Rehabilitation in dementia is unheard of in this part of the world where I live.

The” ESTEEM” cognitive rehabilitation program, a partnership between the National Neuro Institute and the Singapore Alzheimer Disease Association is available to individuals diagnosed with moderate young-onset dementia. Hence, I was left unsupported to cope with my cognitive impairment when Cognitive Rehabilitation (CR) interventions would have helped to ease in transitioning my life to the ‘new normal’ with dementia in a more positive and encouraging light.

I came across the GREAT Cognitive Rehabilitation project of Professor Linda Clare from the University of Exeter when looking for ways to self-help myself.

The program uses a goal-oriented approach to enable people living with mild to moderate dementia to “function optimally in the context of their intrinsic capacity and current health state” [3].

However, the GREAT project is delivered by trained therapists who then work together with each individual to formulate meaningful and intrinsically motivated goals that are realistic and potentially achievable. The drawback is that not everyone can access trained cognitive rehabilitation therapists.

The training materials available are for therapists specializing in cognitive rehabilitation. The content was wordy and conceptual, but I am determined to translate whatever information I could obtain into a self-help Cognitive Rehabilitation strategy. I took ages to read, comprehend the principles, and come out with ways to maintain or regain, or in some cases, compensate for my declining functional ability. It was the best thing I have done to sustain my independence and continue living the life I want. Three years down the road with dementia, I still cook, bake, and enjoy reading. I found that the Cognitive Rehabilitation strategies have enabled me to become stronger in areas I didn’t even consider would be possible. I learned to make bread at home, I regained my ability to use a laptop, and more apt at making Powerpoint slides. The best of all, I conquered my inadequacy and incompetency in writing. I now love to write for my blog.

I want to appeal to policymakers to acknowledge the rights of people living with dementia to rehabilitation services and make it part of the primary healthcare system. It is without a doubt that creating an accessible, dementia-friendly neighborhood help to remove external barriers to participation it is even more crucial to enable people living with dementia to participate in everyday life in a manner that is meaningful and purposeful to them. In this way, it also helps to dispel the public perception of incapacity in dementia.

References:

[1] Cieza A. Rehabilitation the health strategy of the 21st century. Arch Phys Med Rehabil. 2019; 100: 2212-2214

[2] Cieza A. et al.. Global estimates of the need for rehabilitation based on the Global Burden of Disease Study 2019: a systematic analysis for the Global Burden of Disease Study 2019. Lancet. 2020; 396: 2006-2017

[3] Clare L (2017) Rehabilitation for people living with dementia: A practical framework of positive support. PLoS Med 14(3): e1002245. https://doi.org/10.1371/journal.pmed.1002245

Ps. Don’t forget to register for our next “Meeting Of The Minds” Webinar, Disrupted! Resiliently Reintegrating After Stress & Adversity by Dr Kozhi Sidney Makai.

Assoc. Professor James McLoughlin presents here on rehabilitation and dementia at a DAI Webinar hosted in 2016. It is still a hard sell!

 

 

 

 

 

 

 

 

 

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.

Wally Cox: Why I’m glad I found DAI…

This September, we celebrate Dementia Awareness Month 2020 #DAM2020  with a daily series of blogs, vlogs and podcasts, many of them from DAI members talking about why they are glad they found DAI. Many tell us that DAI is Life Changing.

On Day 1, we are thrilled to kick off our series with a video of DAI board member and support group co host, Wally Cox, and his wife and B.U.B. (Back Up Brain), Patricia, sharing why they are glad they found DAI. Thank you Wally and Pat. 

Please Donate to or Partner with DAI. 

John Sandblom: Improving Quality of Life

John Sandblom is a co-founder, Board member and the Treasurer of Dementia Alliance International (DAI). This is his keynote presentation at the opening Ceremony of the ADI Conference in Chicago. He shares the value of joining DAI, and of self advocacy.

“Improving quality of life for people with dementia” by John Sandblom

If you are watching this now, please consider donating to DAI. If you had been privileged enough to attend this conference and listen to John in persn, it would have cost you much more than the registration fee of more than $800 to attend the conference.

DAI is a 501 (c) 3 registered charity; a non-profit organization of people with dementia from 49 countries seeking to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life. Our activisnm for the human rights for all will continue.

Membership of Dementia Alliance International is free, and open to anyone with a diagnosis of any type of dementia. Join DAI here

Or you can subscribe to our newsletter or weekly blog, by registering your email.

International Day of Persons with Disabilities 2018

The World Health Organisation states Dementia is one of the major causes of disability and dependency among older people worldwide” ( 2018).

It also now defines dementia is a condition causing acquired cognitive disabilities.

It is therefore important as an organisation, DAI acknowledges and celebrates this day, as our members, when first diagnosed (even if not visible in the earlier stages of dementia) are living with acquired cognitive disabilities.  However, as dementia progresses, our disabilities are likely to become more obvious, athough this seems to be the lens through which dementia is still only being viewed by health care professionals (in spite of initiatives to diagnose earlier) and many in the community (i.e. late stage).

Seeing dementia through the lens of disability helps us to claim our rights, under the Convention on the Rights of Persons with Disabilities (CRPD).

If you go to the United Nations website, you can read more about the theme of their activiteis today.  What is very relevant to people with dementia is they are focusing in the morning on Sustainable Development Goals, and in the afternoon on Accessible Cities for All: Smart and Inclusive Urban Planning.

This is relevant, in light of the global campaigns to make our communities ‘dementia friendly’, as what we want has little to do with being friendly, and everything to do with inclusion, and therefore access, including access to adequate health care, and disability support including rehabilitation (cognitive and physical).

On the second half of the page about today on the UN, it says:

“In the morning, the commemoration of the International Day of Persons with Disabilities will feature the launch of the first UN Flagship Report on Disability and Development on the “Realization of the Sustainable Development Goals by, for and with persons with disabilities”. The publication will be launched by Mr. Elliott Harris, Assistant Secretary-General, for Economic Development and Chief Economist (UN DESA).

The opening ceremony will review the progress achieved, explore ways to further empower persons with disabilities and provide an overview of the international framework of the implementation of the 2030 Agenda for SDGs, in line with the Convention on the Rights of Persons with Disabilities (CRPD). The event will gather Member States, UN entities, civil society organizations, academic institutes and persons with disabilities.

In the afternoon, the commemoration will focus on “Accessible Cities for All: Smart and Inclusive Urban Planning” as key elements to reduce inequalities and empower people to live in accessible, usable and friendly healthy environments. The event will explore SDG11 of the 2030 Agenda for sustainable development by providing space for Mayors, City Leaders to exchange innovative solutions on how to implement the SDGs and to exchange good practices about inclusive urban planning to promote the participation and well-being of their citizens of all ages and abilities.

Afterwards, the event will discuss smart inclusive environment and how to apply information and communication technologies to provide better infrastructure, quality services in a safe accessible environment.”

People with dementia have definitely become empowered, and are working together locally, nationally and globally to ensure dementia is ot only listed on websites as a condition casuing disabikites, it si a condition where we wil, at the time of diagnosis, be provided with adequate disability assessment and support to maintain independence for as long as possible, not just assessment of our Actvities of Daily Living (ADL’s), and which will also include rehabilitation.

Hello, my name is Jerry Wylie

On the final Day of the #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature Jerry Wylie, DAI’s Vice Chair and an advocate from Philomath, Oregon, in the USA. Jerry is a committed and very active board member, and supports two of our peer to peer support groups, as well as co-hosting our Action Group and wekly Brain Health Meetings.

Thank you Jerry, from everyone, for saying hello again here to support this series, and for all that you do for DAI and others. Jerry has also set up a local face to face support group where he lives, which now has more than 20 members. We are very proud of him, and grateful for his hard work. This is his story.

It is a matter of our Civil Rights

DAI & Jerry Wylie © 2018

DAI’s vision: “A World where people with dementia are fully valued and included.”

Help us support people such as Jerry. Become a DAI Sponsor or Associate today.

Hello, my name is Nina Baláčková

Nina (right) and Eva at the Memory Walk adter the 2013 ADI conference in Taiwan. Image source: Kate Swaffer

On Day 20 of the #DAI #WAM2017 #Hello my name is blog series, we share long time DAI member and friend from the Czech Republic, Nina Baláčková’s story. Through their personal stories, our members want to raise awareness of dementia, and to highlight that each persons lived exerience of dementia is highly individual.

By speaking out, people with dementia are individually and collectively increasing the worlds understanding of living with dementia, and also hope to break down the stigma, myths and discrimination still being experienced. Thank you Nina for allowing us to share your story here.

Raising awareness and finding humour

Hello, my name is Nina Baláčková. I am from the Czech Republic. I am proud to be a member of DAI for several years.

I was diagnosed with Alzheimer’s (Young onset) in 2007 at the age of 49. It took me several months to accept this disease. When I realized that my life can continue, though in another  more difficult form, I decided to enjoy every day I will be here, on the earth, with my family.

We did not know about Alzheimer’s during my mom’s lifetime. Only after her death did the doctor tell me that she had the last stage of Alzheimer’s. It was one of the reasons why I decided to speak up about dementia.

I wish to raise awareness of dementia for many people. So, in 2009 I started to organize discussions named My life with Mr. Alzheimer.

Then I became a member of European Working Group of People with Dementia (EWGPWD), and It has been my pleasure to work with this group of dedicated advocates. I very recently stepped down as a member of the EWGPWD. I am also grateful I was able to speak on the ADI conference in Taipei. 

Thanks to my family, to my strong will and strong faith, support of my church and many friends I have been fighting Mr. Alzheimer persistently for 11 years.

Even though after my husband had been diagnosed with Alzheimer’s last year, it has been very difficult, we still try to enjoy our lives.

The Potato Soup 
Given my lack of taste, smell, poor estimate of the time, distance and quantity, cooking is becoming quite an adventurous matter for me. And I did not even mention the forgetfulness. One autumn day a few years ago I decided to cook potato soup. After the vegetables was ready, peeled, scraped and cut up, I prepared a nice dark roux. Mushrooms, thanks to my daughter, I also had enough. I guessed that I had something missing. But hat was it? Garlic? Marjoram?

That day my friend Eva came to visit us. The soup seemed to look pretty good and was nice and thick. As my friend appeared, I immediately gave her a taste to find out whether it is necessary to add more garlic, salt or marjoram.
My husband, my friend Eva and I, we had a dinner together.

When my husband almost finished, he innocently remarked that it just did not have any potatoes. I thought for a long time and then burst out laughing: “Well, you could not find it, because I forgot to put potatoes in it” . For a long time we were laughing with my friend: potato soup without potatoes ….

Nina Baláčková © 2018 

DAI’s vision is “A World where people with dementia are fully valued and included.”

Help us support people such as Nina. Become a DAI Sponsor or Associate today.

Hello, my name is Dennis Frost

On Day 13 of the #DAI #WAM2018 #Hello my name is blog series, we feature DAI member Dennis Frost from near Kiama in NSW. Dennis speaks to us candidly, sharing his story of being diagnosed with a younger onset dementia, and the advice given to give up work, and that he may have a only few or maybe up to 20 years to live! It is a common story, as this series is highlighting.

Dennis also talks about the stigma, and the reactions of others, and that the stigma and often hidden social barriers are often worse then the dementia. He also shares how meeting others with dementia has helped him to live more productively and positively with dementia. Thank yo Dennis. for sharing your story with us.

Dementi Alliance International &  Dennis Frost © 2018

DAI’s vision is “A World where people with dementia are fully valued and included.”

Help us support people such as Dennis. Become a DAI Sponsor or Associate today.

Hello, my name is Jeff Borghoff

On Day 12 of the #DAI #WAM2018 #Hello my name is blog series, we feature new DAI member Jeff Borghoff from the US. This series is not only about raising awareness of the many lived experiences of dementia, it is highlighting the challenges, as well as the reality that so many people continue to live positive lives, alongside dementia. Thank you Jeff for allowing us to share your story; everyone at DAI, and the global dementia communtiy is helped and educated through you inviting us into you and your family’s world.

Dementia does not define me

Image source: Jeff Berghoff

Hello, my name if Jeff Borghoff, and with my wife Kim, we reside in Forked River, New Jersey with our three children. I was diagnosed with younger-onset Alzheimer’s disease in 2016 at age 51. During my career, I was a software architect and developer responsible for the design, implementation and project management of technical solutions to help companies solve document-intensive business challenges.

Several years prior to the diagnosis, I experienced changes in my ability to recall information. Although my spouse, Kim was noticing these difficulties at home, the issues were predominant in my professional life where I experienced increasing difficulty with problem solving, managing tasks and providing appropriate supervision to his team.  Therefore, I approached my management team and asked for an alternate position with less responsibility. However, even in this new role, I still found it difficult to manage my duties.

Shortly thereafter, I experienced a serious stomach virus which led to a brief hospitalization. A series of physical neurological symptoms, including facial twitches soon followed which resulted in multiple visits to specialists, and I was still experiencing changes in my memory, but also began to notice differences in my balance and speech. After six months of testing, which included CT, scans, MRIs, spinal taps and neuropsychological evaluations, I was diagnosed with younger-onset Alzheimer’s disease. My father is also living with the disease.

Kim was the first person to receive the news of my diagnosis. She immediately called me and we met to discuss the diagnosis at a nearby park. Although I had been anticipating a serious diagnosis and researching Alzheimer’s disease extensively, I was still stunned and saddened by the news. Together, we went back to meet with the neurologist to discuss next steps, including planning for the future.

Together, we decided to share the diagnosis immediately with our three children. Their reactions ranged from devastation to anger and sorrow. After sharing the diagnosis with others, we have found most to be sympathetic, but often surprised that someone of my age could be diagnosed with younger-onset Alzheimer’s disease.

We began planning for the future by meeting with an attorney and making legal and financial plans, including powers of attorney and applying for Social Security Disability Insurance (SSDI). We also scaled back on our spending and invited my parents to live in a converted two-car garage in-law suite. My parents are also helping to pay off the home mortgage as they prepare for their future cost of living.

After finding the Alzheimer’s Association online, together with my family we created our “Walk To Remember” Walk To End Alzheimer’s team to raise funds for the Alzheimer’s Association.  I also enrolled in the Medic Alert + Alzheimer’s Association Safe Return® program and am enrolled in a clinical trial through the Alzheimer’s Association TrialMatch®.

As a participant in the Alzheimer’s Association 2016 National Early-Stage Advisory Group and Early-Stage Ambassador for the Delaware Valley and Greater NJ chapters, I help raise awareness of younger-onset Alzheimer’s disease and the value of early detection and diagnosis.

“I am not letting this disease define who I am and what I do on a daily basis. I am doing everything I can to raise awareness.”

Copyright 2018: Jeff Borghoff, Living with Alzheimer’s Disease

Help support people such as Jeff. Become a DAI Sponsor or Associate today.

Jeff joined DAI this year,  and is involved in many other organisations and personal things, including managing his own website.

– Alzheimer’s Association National Early-Stage Advisory Group
– Early-Stage Ambassador – Delaware Valley & Greater NJ Early Stage Advisory Council
– Alzheimer’s Congressional Team (ACT) Member

Hello, my name is Maria Turner

On day eight of DAI’s World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our USA members stories of living with dementia, and the presentation she made on Day two of the ADI confernce recently with her amazing son Rhys Dalton.

Thank you Maria and Rhys for allowing DAI to publish this during September to help us raise awareness. Together with Rhy’s fiance Kayla, you are an awesome team, and we love and are inspired daily by you all.

This is an example of Maria using her voice. Their full speech notes are available here…

Mother and Son: The Impact of Younger Onset Dementia (YOD)

Dementia Alliance International, Maria Turner & Rhys Dalton © 2018

Please donate to DAI, so we can continue to support members like Maria and her son Rhys.