Hong Kong’s first support programme for younger-onset dementia

Hong Kong’s first younger-onset dementia (YOD) support programme is launched recently to provide free diagnostic, referral and follow-up services to individuals aged 40–65 years with suspected or diagnosed YOD.

While dementia predominantly occurs in the geriatric population, a small proportion of cases is of younger onset in individuals aged <65 years. “The WHO estimated that YOD accounts for up to 9 percent of dementia cases, which translates to more than 13,000 people with YOD [PWYOD] in Hong Kong,” said Professor Timothy Kwok of the Department of Medicine & Therapeutics, the Chinese University of Hong Kong, Director of the Jockey Club Centre for Positive Ageing (JCCPA). [JAMA Neurol 2021;78:1080-1090]

YOD poses tremendous personal and familial challenges. Unlike patients with late-onset dementia, PWYOD may not exhibit typical symptoms such as memory decline. Instead, they often present with behaviour or personality changes as well as language and balance impairments, which lead to delayed diagnosis, resulting in frustration and distress in PWYOD and their caregivers. Importantly, the symptoms could result in loss of independence, unemployment, financial difficulties, and reversal in roles (children becoming the caregivers of their parents) at a relatively young age. [Intern Med J 2016;46:779-786; Neurology Asia 2019;24:139-146; BMC Health Serv Res 2022;22:14]

“However, community services for dementia in Hong Kong are mostly for geriatric patients. There is an urgent need to develop a structured intervention protocol to address the specific needs of PWYOD,” noted Kwok. “JCCPA has developed Hong Kong’s first systematic pilot project, based on Dementia Australia’s evidence-based service model, to support people aged 40–65 years with suspected or diagnosed YOD and their caregivers.”

The 3-year innovative Jockey Club Younger Onset Dementia Support Project provides free cognitive assessment and relevant evaluation (ie, blood and urine tests, MRI brain scan) for individuals with suspected YOD, as well as referral to specialists for further investigations and diagnosis. For those with confirmed YOD, need-based service referral is provided, including referral to a speech therapist for addressing aphasia and preserving communication abilities, a psychiatrist or neurologist for postdiagnosis consultation, an occupational therapist for home environment assessment and advice on home modifications, and a family therapist for family counselling and cohesion building. The project also provides 10 sessions of postdiagnosis support service over 3–6 months, coordinated by a dedicated case manager, including:

·       Half-day experience of JCCPA day care service;

·       YOD knowledge, caregiving skills, and communication strategies;

·       Advice on coping with daily life for PWYOD;

·       Mechanisms for coping with stress and emotions for caregivers;

·       Well-being action plan covering healthy lifestyle, financial planning and advance care planning;

·       Community resources. [https://www.jccpa.org.hk/en/projects/yod]

As of February 2023, 30 PWYOD and their family members have participated in this project, and a total of 250 families are expected to participate by October 2024. Interested parties may call 2333 2393 or email info@jccpa.org.hk for details and enrolment.