The image shows the “Make the Right Real in Malaysia” logo of The OKU Rights Matter website and an image of two smiling brothers, the older with his right hand over the right shoulder of the younger one with spinal muscular atrophy and using a wheelchair.

Dementia

Even trees need a friend. We all need friends. It all happens automatically. We want to use a lot pressure while using no pressure at all.

Dementia

Dementia is an umbrella term for progressive degenerative brain syndromes which affect memory, organisation, language and communication, movement, motor functions and other thinking abilities that affect a person’s daily living.

There are several types of dementia, including:

  1. Alzheimer’s Disease
  2. Vascular Dementia
  3. Parkinson’s Disease Dementia
  4. Lewy Body Dementia
  5. Frontotemporal Dementia
  6. Huntington’s Disease
  7. Normal Pressure Hydrocephalus
  8. Creutzfeldt-Jakob Disease
  9. Korsakoff Syndrome
  10. Mixed Dementia
  11. Childhood Dementia

Although challenging at times, people with dementia can live well with adequate support systems that focus on their wellbeing and that of their care partners / caregivers.

Resources

*Note: Resources linked are in English and pdf or webpage format, unless stated otherwise.

Status Report and Fact Sheet

Fact Sheet on Dementia by Sharifah Tahir, Emily Ong & Yuenwah San

  • available in accessible pdf, word, epub and html

Global Dementia Observatory by World Health Organization (WHO)

  • Global action plan on the public health response to dementia 2017-2025
  • Global status report on the public health response to dementia

Reports by Alzheimer’s Disease International, including World Alzheimer Report (from 2009 to the latest)

Childhood Dementia: the case for urgent action by The Childhood Dementia Initiative

Living with Dementia

The dementia guide: Living well after your diagnosis by Alzheimer’s Society, UK

Our “Top Tips” for living well with dementia by The Scottish Dementia Working Group

Post-Diagnostic Resource by The Scottish Dementia Working Group

Dementia and Sensory Challenges by The Scottish Dementia Working Group

The lived experience of people with dementia by Romayne Gallagher

Supporting Dementia

Caring for a person with dementia: A practical guide by Alzheimer’s Society, UK

‘Nothing Ventured nothing gained’: Risk Guidance for people with dementia by Jill Manthorpe & Jo Moriarty for Department of Health, UK

Supporting Dementia Self Advocates: A Directory of Resources by Dementia Alliance International, 3 Nations Dementia Working Group & Alzheimer’s Society

Living with Dementia: A Resource Kit for Caregivers by Agency for Integrated Care, Singapore

– available in English, Mandarin, Malay and Tamil

Dementia-inclusive Environment

Dementia-friendly environment checklist by Alzheimer’s Society, UK

Dementia-friendly environments: Noise levels by Social Care Institute for Excellence (SCIE), UK

Dementia and Town Planning: Creating better environments for people living with dementia by Royal Town Planning Institute, UK

Looking to the Future – Inclusive Design for People Living With Dementia by Agency for Integrated Care, Singapore

Creating a relaxing environment for people with dementia by Social Care Institute for Excellence, UK

Community initiatives for a dementia-friendly environment:

– Building an inclusive, dementia-friendly Kebun Baru (Singapore)

– ‘Calm zones’ to be available at some mall stores to provide respite from hustle and bustle for shoppers (Singapore)

– What does a dementia-friendly town look like? (Scotland)

Involving Persons with Dementia

Involving people with dementia as members of steering or advisory groups by The Dementia Engagement and Empowerment Project (DEEP), UK

Collecting the views of people with dementia by The Dementia Engagement and Empowerment Project (DEEP), UK

Language Guidelines

Dementia words matter: Guidelines on language about Dementia by The Dementia Engagement and Empowerment Project (DEEP), UK

Dementia Language Guidelines by Dementia Australia

Other Resources

Designing to Include Dementia & Personhood by Ron Beleno, Jennifer Boger, Arthena Caston, Luna Kawano, Jennifer Krul, Roger Marple, Jay Reinstein, Tynan Sears, Mack Wilson

Engagement of people with lived experience of dementia advisory group and cross-cutting program: reflections on the first year by Ellen Snowball, Rosette Fernandez Loughlin, Heather Eagleson, Karen Myers Barnett, Emily McLellan, Denis O’Connor, Catherine Kelly, Christine Thelker, Katherine S. McGilton & Jennifer Bethell

Creating a consumer-driven global community of practice to support action within environmental design with people living with dementia: assistive technology challenges and opportunities by Emily Ong, Dennis Frost, Saskia Kuliga, Natasha Layton & Jacki Liddle

Podcasts

*Note: audio transcripts of podcasts are not available unless specified

Doctor in the House: Understanding Dementia as a Disability on BFM Malaysia

Advance Care Planning and dementia with Wendy Mitchell on Conversations on Advanced Care Planning Podcast

First Person Accounts of Living with Dementia

Emily Ong (Singapore)

Wendy Mitchell (United Kingdom)