The Influence of the End of Life on the Extent of Informal Help Received by Older Adults

Abstract

This study examines the extent of informal help received in the home among the respondents to the Longitudinal Study on Aging. The focus is on the direct effects of health status on receiving informal help for activities of daily living (ADLs) and how receiving that informal help is influenced by proximity to death. The findings show that proximity to death is consistently related to receiving help from friends and relatives for those receiving help with basic and household ADLs. The findings also show how different dimensions of health status affect getting help. In addition to the effects of various dimensions of health status, some sociodemographic factors are important. The extent of informal help with basic and advanced ADLs increases with age, but socially isolated individuals (e.g., those living alone) receive substantially less help for all ADLs. Socioeconomic factors and race are for the most part unrelated to getting informal help.

End‐of‐life in a Swedish population: demographics, social conditions and characteristics of places of death

“…One study (18) reported that among 988 terminally ill patients living in private homes, nearly 87% needed such assistance, including transportation, homemaking services, nursing care and personal care. Another study demonstrated that the vast majority who live alone at the end‐of‐life in private homes are placed in a particularly vulnerable situation (19). Living alone thus increases both the likelihood and necessity for institutionalized living and care (22, 23, 32).…”

“…While many Western countries have experienced similar socio‐demographic trends in the past few decades, their impact differs significantly among these countries, reflecting not only societal and cultural values but also availability of institutional care for frail or elderly individuals (17). Previous studies show that demographic and social conditions influence factors such as sources for help at the end‐of‐life (18, 19), place of care (20, 21), need for nursing‐home admission (22–24) and place of death (25–28). Studies of the Swedish population at the end‐of‐life have however been rare and there are limited data not only with respect to the demographic and social conditions but also the extent to which they relate to the physical settings in which individuals die in Sweden.…”

The support needs of terminally ill people living alone at home: a narrative review

“…Goodridge et al ( 2010 ) Canada Rural residents with advanced respiratory disease in the last 12 months of life Retrospective cohort of patients who died in 2004 of lung cancer or COPD ( n = 1098) Not stated; inferred by absence of a spouse Widows/widowers had significantly fewer physician visits in the 12 months prior to death; people who had never married or were separated/divorced had significantly fewer hospitalizations (6) Hanratty et al ( 2013 ) UK Adult palliative care patients expected to die within 12 months In-depth qualitative interviews ( n = 32) 62.5% The home alone participants described being disadvantaged in terms of access to practical and emotional supports and their ability to direct their care (7) Iliffe et al ( 2007 ) UK Adults (65 years and older) living without disabilities in the community Retrospective analysis of baseline data from an RCT of health risks in older people ( n = 2641) 33% Living alone was significantly associated with risk of social isolation and depressed mood (8). Johnson, Gallagher, and Wolinsky ( 2004 ) USA Adults (70 years and older) living in the community who rely on in-home informal care Longitudinal study with four data collection points (1984, 1986, 1888, and 1990) ( n = 7527) Not stated Older adults who lived alone reported receiving significantly less assistance with activities of daily living than those who lived with others or were married (9) Kharicha et al ( 2007 ) UK Adults (65 years and older) living without disabilities in the community Retrospective analysis of baseline data from an RCT of health risks in older people ( n = 2641) 33% People living alone were significantly more likely to report a range of psychosocial difficulties in relation to activities of daily living, mood, memory, physical activity, vision, diet, alcohol use, multiple falls, and social isolation a Rounded to nearest whole number. …”

“…Nine studies (24%) highlighted the considerable health and psychosocial disadvantages experienced by people living alone at end of life ( Table 2 ; NB: Two of these studies also provided data on places of care and death and therefore appear in both tables). People living alone at the end of life reported more distress, poorer adjustment to diagnosis, and reduced quality of life, and received less help with activities of daily living than those living with others (Chibnall et al, 2002 ; Johnson et al, 2004 ). Interviews with adult palliative care clients living at home without a caregiver in the UK (Hanratty et al, 2013 ) and Australia (Aoun et al, 2008 ) showed that patients faced challenges in meeting their care needs and perceived they were disadvantaged in terms of receipt of practical and emotional supports.…”