The impact of dementia on individuals with intellectual disabilities living in residential care homes in Hong Kong

Abstract

An increasing number of individuals with intellectual disabilities (ID) are affected by dementia as they age. However, limitations in cognition and communication have posed barriers to investigating their experiences related to dementia.

Aims: This study aims to explore the impact of dementia on individuals with ID in Hong Kong. This ethnographic case study investigated the experiences of three purposively sampled participants with ID and diagnosed dementia living in two residential care homes. Participant observations were conducted over 19 months. Ethnographic analysis and cross-case analysis were conducted to identify commonalities and differences in their experiences. Participants with ID and dementia underwent significant changes in their physical, psychosocial, behavioral and spiritual aspects of daily life. Physically, they faced challenges such as a gradual loss of functional abilities, sleep and hearing disturbances, frequent hospitalizations and drug side effects due to polypharmacy. Psychologically, they exhibited personality changes and emotional fluctuations. Socially, they experienced role changes, a loss of ability to connect with peers, limited choices in social activities, and increased social isolation. Behaviorally, they demonstrated changing patterns of challenging behaviors. Spiritually, they encountered barriers to maintaining religious practices and communication of spiritual needs. Individuals with ID experienced significant changes in their daily lives in a relatively short period after being diagnosed with dementia. However, they are often being excluded from their own care planning. Caregivers should provide early information and tailored support to help individuals understand and cope with their changing experiences.