Tag Archives: Emily Tan Tan Ong

Newsflash: Environmental Design Special interest Group

Announcing the DAI Environment and Dementia Special Interest Group (ED-SiG)

As announced in our e-Newsletter earlier this week, the DAI Board of Directors has just endorsed a new group, the Environment and Dementia Special Interest Group (ED-SiG), an initiative set up by new board member, Emily Tan Tan Ong from Singapore.
It is an important initiative that DAI believes will increase opportunities for global collaboration and cooperation on a critical issue effecting people with dementia and our families.
The aim of this group is to create action following the award-winning ADI  2020 World Alzheimer’s Report, and the subsequent Design Manifesto which was initiated by the lead authors of the WAR Report, Professor Richard Fleming, Kirsty Bennett and John Zeisel.

Ps. Don’t forget  to sign up for our next Webinar,  From Rhetoric to Reality: Designing well for people living with dementia being presented by the authors and ADI’s Acting CEO, Chris Lynch. 

Purpose and role of the ED-SiG: The broad purpose of this group is to provide expert advice on and input into working towards the importance of, and more importantly, moving from the rhetoric of dementia-enabling design to the implementation of environmental design. This group proposes it is with a particular focus on dementia-enabling design in the community. Environment is more than just the built environment; it includes all the surrounding things that have a direct impact on our lives.

We believe there is a need to look into all aspects of environment including:

  1. Natural environment – how can we incorporate the natural surroundings to provide the peace and tranquility to the quality of life of those living with dementia who need the calmness from the nature as a healing therapy
  2. Built environment – how can buildings and infrastructures be designed in a manner that is accessible and usable by everyone including people with disability
  3. Rehabilitative environment – how can the environment minimise impairments impact, activity limitation and participation restrictions
  4. Communal living environment – how an environment can be intentionally created to reflect the shared values of a community
  5. Sustainable environment – how an environment is designed to promote and support a more sustainable lifestyle like Grow Your Foods, the 3Rs, No Food Wastage

Aims of the EDG-SiG:  The group is an initiative of DAI member Emily Tan Tan Ong, and was formally established in 2021, and approved by the board of Dementia Alliance International.

After years of costly and time consuming reports, multiple costly research projects, and many community initiatives such as the Dementia Friendly Communities, that none of these or other initiatives appear to have made little if any impact on improving inclusion and  access, or quality of life, the time is now for action.

This group is therefore committed to advocate for action; to move away from rhetoric, to tangible change that really makes a difference.

Members currently include:

  1. Mrs Emily Ong, Singapore (Lead)
  2. Ms Kate Swaffer, Australia
  3. Emeritus Professor Richard Fleming, Australia
  4. Professor Habib Chaudhury, Canada
  5. Mrs Christine Thelker, Canada
  6. Dr Tetsuro Ishihara, Japan
  7. Associate Professor Carol Ma, Singapore
  8. Associate Professor Shamira Perera, Singapore
  9. Professor Satoko Hotta, Japan
  10. Professor Satochi Ishii, Japan
  11. Tomofuni Tanno, Japan
  12. Dr Jan Golembiewski, Australia

If you would like to join this initiative, please contact us at [email protected] with a brief introduction about yourself, and your reasons for wanting to join.

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.