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Jockey Club Younger Onset Dementia Support Project

With the generous donation by The Hong Kong Jockey Club Charities Trust, Jockey Club Centre for Positive Ageing (JCCPA) has launched the first systematic pilot project in Hong Kong which strives to deliver quality service of dementia care for People with younger onset dementia, the Jockey Club Younger Onset Dementia Support Project.


This 3-year innovative pilot project aims to support people who are suspected/diagnosed with younger onset dementia and also their family caregivers. The project adopts the evidence-based service model based on the strategy developed by Alzheimer’s Australia (now as Dementia Australia) and the workbook namely “Working collaboratively with clients and family carers: A Practical guide to implementing the Goal Attainment Scale in younger onset dementia care services: Workbook activities”, developed by Associate Professor Victoria Traynor (University of Wollongong, Australia). With the service model, we hope to support our service targets formulate a suitable “well-being action plan” for the future. Also, to help caregivers understand their role changes and develop different coping mechanisms from a new perspective, thus, to enhance their positive caring experience, knowledge and skills, to relieve the burden for caring, and walk with people with younger onset dementia.

Introduction

What is Younger Onset Dementia?
According to the statistics from the World Health Organization, account up to 9% of people with dementia are people with younger onset dementia. Deducing on this figure on the circumstances in Hong Kong, it is estimated that there are currently more than 13,000 people in Hong Kong who are with Younger Onset Dementia.

Dementia is a general term for patients with an abnormal decline in brain function caused by neurodegenerative disease; it is also a disease that occurs due to the gradual loss of brain function, which affects memory, thinking, language, judgment, behavior and character of people with younger onset dementia. If dementia-related symptoms were exhibited at or before the age of 65 on oneself, it would be defined as younger onset dementia. Its clinical features would differ from people with dementia. Hence, there are many life changes and different experiences facing by people with younger onset dementia that are worth our attention.
Understanding Younger Onset Dementia
Causes:
  • Younger onset dementia involves many causes, such as alcohol consumption, metabolic causes, genetic diseases, etc. The causes of younger onset dementia are more extensive than general dementia
  • More related to family history
Features:
  • Memory loss may not have to be the first symptom
  • Behavioral, language, visual and personality changes may occur during early stages
  • Symptoms could be mistaken as other psychiatric conditions
  • Greater chance of having difficulty with movement, gait, physical coordination, and balance
  • May be as different types of dementia
Voices from People with Younger Onset Dementia and their caregivers
Sharing from a person with younger onset dementia:
“As simple as taking the MTR, I will face some challenging circumstances. For example, I feel tense as I cannot figure out what is the next stop. When I was most anxious, to make sure that I did not miss my stop, I would rush out of the train and go to the platform to check on which station I am currently at. I don’t dare to ask people, as I look quite young. I am worried that people would call me insane or trick them if I ask them what the next station is.”

The experience of the wife of a person with younger onset dementia:
My husband is a person with younger onset dementia. He once got lost, and I brought my five-year-old child with me to search around our home for a whole day, but I still couldn’t find him. Fortunately, my husband returned home by himself the next day. I feel so helpless as there are no systematic supporting services at the current stage.

Objectives

  • Raising public awareness of brain health and younger onset dementia and understanding the importance of early planning
  • Providing appropriate services for the unique needs of people with younger onset dementia
  • Enhancing the confidence and ability of older/younger family members in caring for people with younger onset dementia
  • Training different medical professionals to strengthen their understanding and caring strategy on younger onset dementia

Service Targets

  • People who aged 40-60 and suspected/diagnosed with younger onset dementia and their caregivers
  • People who aged 61-65 and suspected/diagnosed with younger onset dementia and their caregivers (currently not receiving other dementia-related services)

Service Period

Now until October 2024

Service Arrangement

Diagnostic Service

Providing a one-time free diagnosis and examination for those who have not been diagnosed with younger onset dementia (including the first doctor consultation, blood and urine laboratory tests, 3.0T MRI brain scan). If necessary, participants may need to pay other expenses for further diagnosis recommended by the doctor.

Dedicated Case Manager

Free follow-up services and providing care training for people who are diagnosed with younger onset dementia and their caregivers.

Specialist/Professional Consulting Services

Providing free referrals to designated specialists / speech therapy services / occupational therapy services / family therapy services for participants in need.
(The plan provides free specialist/professional consulting services. Due to the limited quota of services, the project would allocate services on a first-come-first-served basis.)
*JCCPA reserves the right to revise the above terms and conditions at any time, and has the right to terminate or modify services and subsidies without prior notice. In case of any dispute, JCCPA reserves the right of final decision.

Service Flow

Overseas consultant

Ms Kate Swaffer
Ms Swaffer, a nurse, was diagnosed with younger onset dementia shortly before her 50th birthday. Now, in her 60s, she is a global advocate for the rights of people with dementia and has given a speech at the World Health Organization on proving effective interventions can delay the impacts of dementia. She is currently providing crucial support and guidance to this project.

Leaflet (only available in Chinese)