With the generous donation by The Hong Kong Jockey Club Charities Trust, Jockey Club Centre for Positive Ageing (JCCPA) has launched the first pilot project in Hong Kong which strives to deliver quality service of dementia care for People with younger onset dementia.
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
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.
Causes:
- Younger onset dementia involves many causes, such as alcohol consumption, metabolic effect, 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 as it 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
Impacts and challenges:
When the symptoms of younger onset dementia appeared, many people are still at work or being the primary caregivers in the family for their elderly parents and/or young children. Therefore, people with younger onset dementia and their families may face more challenges than those being diagnosed at older age.
- Family: Changing roles from breadwinners or caregivers to being cared
- Career: Retiring from work prematurely due to compromised performance
- Social: Relatives and friends may not know or understand their circumstances and difficulties, resulting in adverse perceptions
- Financial: If people with younger onset dementia is the breadwinner of the family, it may have significant impacts on financial planning
- Support: Difficult to apply community services which commonly targeted at age 65 or above
- Lack of intergenerational and couple support services for younger onset dementia in social welfare institutions
- Poor public awareness resulting in negative labeling
- The younger onset condition might be misjudged and lead to misunderstanding
Sharing from a person with younger onset dementia:
“As simple as taking the MTR, I feel tense as I cannot figure out what is the next stop. 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 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 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 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 (Full Quotas)
Providing a one-time free diagnosis and examination. (Elementary cognitive diagnosis is included. If necessary, participants may need to pay other expenses recommended by the doctor).
Dedicated Case Manager
Free follow-up services and providing care training for people who are diagnosed and their caregivers.
Specialist/Professional Consulting Services
Providing free referrals to designated specialists / speech therapy services / occupational therapy services / family therapy services.
*JCCPA reserves the right to revise all terms and conditions at any time, and has the right to terminate or modify services and subsidies without prior notice. For the latest information, please refer to JCCPA website. We would not be responsible for any misleading or outdated information quoted/provided by other organizations/websites/ media. In case of any dispute, JCCPA reserves the right of final decision.
Service Flow
Overseas consultant
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.
