Prevalence, Characteristics, and Unmet Needs of Unbefriended Residents in Alberta Long-Term Care Homes

Abstract

Background: Older adults who lack decision-making capacity and a willing or able surrogate to act as their representative are defined as unbefriended. These unbefriended older adults often require a public guardian and reside in long-term care (LTC) homes. Unbefriended LTC residents are at risk of poor quality of care, yet very little is known about this vulnerable resident population. Purpose: The purpose of this dissertation was to assess the prevalence, characteristics, and potentially unmet needs of unbefriended residents in Alberta LTC homes. Methods: This dissertation consisted of four linked studies: (1) a scoping review of the peer-reviewed and grey literature on unbefriended older adults; (2) a qualitative interview study of LTC staff and public guardians to identity the characteristics and unmet needs of unbefriended LTC residents; (3) a prevalence survey to assess the prevalence of unbefriended residents in all 172 Alberta LTC homes; and (4) a retrospective cohort study of health administrative data to further assess the prevalence, characteristics and health outcomes of unbefriended residents from a LTC home sample from Alberta. Findings and Conclusions: Our findings demonstrated that there is little research on unbefriended older adults and no other Canadian studies or reports. Neither the United States (US) nor Canada systematically collect information on unbefriended older adults’ characteristics or quality of care. Unbefriended LTC residents are socially isolated. Compared to LTC residents with family, they had lower social engagement, worse symptoms of depression, and more aggressive behaviours. Across two of our studies (interviews and administrative data), our findings indicated that unbefriended residents had significant mental health issues including diagnoses of depression, schizophrenia, and bipolar disorder. Unbefriended residents have limited financial resources and have significant issues accessing personal care items and services. Our findings suggest that unbefriended individuals experience poor quality of care, particularly at the end of life. Public guardians visit unbefriended residents infrequently and are often unavailable when contacted by LTC staff. The public guardians’ scope of work does not reflect the needs of unbefriended LTC residents, leaving the LTC staff responsible for providing the additional care and support. Unbefriended residents accounted for over 4% of all LTC residents in Alberta. Facilities with the highest proportion of unbefriended residents had more than 135 beds and were public-not-for profit. Unbefriended residents experienced more symptoms of depression, more frequent and severe pain, and exhibited more aggressive behaviours than residents with family. The findings from this dissertation indicated the unbefriended LTC residents have complex care needs and are vulnerable to poor quality of care.