Use and costs of services and unpaid care for people with mild‐to‐moderate dementia: Baseline results from the IDEAL cohort study

Abstract

Introduction We examined 3‐month service use and costs of care for people with mild‐to‐moderate dementia in Great Britain. Methods We analyzed Improving the experience of Dementia and Enhancing Active Life cohort study baseline data on paid care, out‐of‐pocket expenditure, and unpaid care from participants with dementia (N = 1547) and their carers (N = 1283). In regression analyses, we estimated per‐group mean costs of diagnostic and sociodemographic subgroups. Results Use of services apart from primary and outpatient hospital care was low. Unpaid care accounted for three‐quarters of total costs (mean, £4008 [standard error, £130] per participant). Most participants (87%) received unpaid care equating to 36 hours weekly. Estimated costs for people with Parkinson's dementia were £8609, £4359 for participants with mixed dementia, and £3484 for those with Alzheimer's disease. Total costs were lower for participants with dementia living alone than living with others (£2484 vs. £4360); costs were lower for female than for male participants (£3607 vs. £4272). Discussion Costs varied by dementia subtype, carer status, and living arrangement. Policy makers should recognize the high costs of unpaid care for people with dementia, who do not always get the support that they need or would like to receive.

Use of Services by People Living Alone With Cognitive Impairment: A Systematic Review

“…Detailed characteristics of the included studies are outlined in Table 1 in the Supplementary Material . Thirteen countries were represented: United Kingdom ( n = 7; Chi et al, 1995 ; Gage et al, 2015 ; Henderson et al, 2019 ; Knapp et al, 2016 ; Miranda-Castillo et al, 2010 ; Schneider et al, 2002 ), United States ( n = 5; Alzheimer’s Association, 2012 ; Bass et al, 1992 ; Edwards & Morris, 2007 ; Gibson & Richardson, 2017 ; Webber et al, 1994 ), Sweden ( n = 5; Larsson et al, 2004 , 2006 ; Måvall & Malmberg, 2007 ; Wattmo et al, 2011 , 2014 ), Canada ( n = 4; Ebly et al, 1999 ; Thiruchselvam et al, 2012 ; Tuokko et al, 1999 ), Germany ( n = 3; Eichler et al, 2016 ; Michalowsky et al, 2016b , 2018 ), Japan ( n = 2; Lin et al, 2017 ; Takechi et al, 2012 ), France ( n = 2; Nourhashemi et al, 2005 ; Soto et al, 2015 ), Australia ( n = 1; Rahja et al, 2018 ), Ireland ( n = 1; O’Brien et al, 2019 ), and Norway ( n = 1; Moholt et al, 2020 ). One European study included participants from the Netherlands, Germany, the United Kingdom, Ireland, Sweden, Norway, Italy, and Portugal ( Kerpershoek et al, 2019 ).…”

“…Race/ethnicity data were only reported in seven studies ( Bass et al, 1992 ; Edwards & Morris, 2007 ; Gibson & Richardson, 2017 ; Knapp et al, 2016 ; Schneider et al, 2002 , 2003 ; Webber et al, 1994 ); in one of these, the sample was 100% African American ( Edwards & Morris, 2007 ), and the remaining six were majority White ( Edwards & Morris, 2007 ; Knapp et al, 2016 ; Schneider et al, 2002 , 2003; Webber et al, 1994 ). Out of the 32 studies, 18 included any dementia diagnosis ( Alzheimer’s Association, 2012 ; Ebly et al, 1999 ; Edwards & Morris, 2007 ; Eichler et al, 2016 ; Gage et al, 2015 ; Henderson et al, 2019 ; Kerpershoek et al, 2019 ; Knapp et al, 2016 ; Michalowsky et al, 2018 ; Miranda-Castillo et al, 2010 ; Moholt et al, 2018 ; Nourhashemi et al, 2005 ; O’Brian et al, 2017 ; Rahja et al, 2018 ; Schneider et al, 2002 , 2003 ; Soto et al, 2015 ; Webber et al,1994 ), seven included people with any kind of cognitive impairment ( Bass et al, 1992 ; Chi et al, 1995 ; Gibson & Richardson, 2017 ; Michalowsky et al, 2018 ; O’Brian et al, 2017 ; Takechi et al, 2012 ; Thiruchselvam et al, 2012 ), and seven included only Alzheimer’s disease ( Edwards & Morris, 2007 ; Knapp et al, 2016 ; Nourhashemi et al, 2005 ; Soto et al, 2015 ; Wattmo et al, 2011 , 2014 ; Webber et al, 1994 ; Tuokko et al, 1999 ). Two studies had no comparison group, meaning all participants had cognitive impairment and lived alone ( Gibson & Richardson, 2017 ; Thiruchselvam et ...…”

“…Two studies had no comparison group, meaning all participants had cognitive impairment and lived alone ( Gibson & Richardson, 2017 ; Thiruchselvam et al, 2012 ). In 21 studies, the researchers compared PLACI and people with cognitive impairment living with others, without specifying who the “others” were ( Alzheimer’s Association, 2012 ; Bass et al, 1992 ; Ebly et al, 1999 ; Edwards & Morris, 2007 ; Gage et al, 2015 ; Henderson et al, 2019 ; Kerpershoek et al, 2019 ; Knapp et al, 2016 ; Måvall & Malmberg, 2007 ; Michalowsky et al, 2016 , 2018 ; Miranda-Castillo et al, 2010 ; Moholt et al, 2018 ; Nourhashemi et al, 2005 ; Rahja et al, 2018 ; Soto et al, 2015 ; Takechi et al, 2012 ; Wattmo et al, 2011 ; Webber et al, 1994 ). Six studies specificied the characteristics of the cohabiting person(s) (i.e., spouse, children; Ebly et al, 1999 ; Eichler et al, 2016 ; Schneider et al, 2002 , 2003 ; Tuokko et al, 1999 ; Wattmo et al, 2014 ).…”

“…Finally, two studies compared PLACI with people living alone without cognitive impairment ( Huei-Ru et al, 2017 ; O’Brien et al, 2017 ), and one compared the proportion of people living alone in two groups of service users: one with cognitive impairment and one without cognitive impairment ( Larsson et al, 2006 ). Fifteen studies recruited participants through specialist providers (memory clinics, dementia case managers, and research centers; Edwards & Morris, 2007 ; Henderson et al 2019 ; Kerpershoek et al, 2019 ; Måvall & Malmberg, 2007 ; Miranda-Castillo et al, 2010 ; Moholt et al, 2018 ; Nourhashemi et al, 2005 ; Rahja et al, 2018 ; Schneider et al, 2002 , 2003 ; Soto et al 2015 ; Takechi et al, 2012 ; Wattmo et al, 2011 , 2014 ; Webber et al, 1994 ), nine recruited through generalist local providers (home care or primary care; Bass et al, 1992 ; Chi et al, 1995 ; Eichler et al, 2016 ; Gage et al, 2015 ; Knapp et al, 2016 ; Michalowsky et al, 2016b , 2018 ; O’Brien et al, 2017 ; Thiruchselvam et al, 2012 ), four studies used national data sets ( Alzheimer’s Association, 2012 ; Ebly et al, 1999 ; Gibson & Richardson, 2017 ; Tuokko et al, 1999 ), and four used local data sets ( Edwards & Morris, 2007 ; Huei-Ru, 2017 ; Larsson et al, 2004 , 2006 ). Sixteen studies reported only on social services ( Gibson & Richardson, 2017 ; Huei-Ru et al, 2017 ; Kerpershoek et al, 2019 ; Larsson et al, 2004 , 2006 ; Måvall & Malmberg, 2007 ; Michalowsky et al, 2018 ; Moholt et al, 2018 ; O’Brien et al, 2017 ; Rahja et al, 2018 ;…”

Table_1.DOC

“…Drugs and/or surgery are available for symptomatic relief, but thus far nothing is available yet to delay or reverse disease progression. Given their increasingly enlarged size and lack of therapeutics, AD and PD have become two of the leading causes of disability, which greatly burdens patients and their families, as well as social health and care systems (Rajiah et al, 2017;Henderson et al, 2019).…”