Table 1.
Study characteristics (grouped by setting).
| Authors | Country | Study design | Sample characteristics | Eligibility criteria | End of life definition | Care setting |
|---|---|---|---|---|---|---|
| Agar et al. 29 | Australia | Randomised controlled trial | 286 nursing home residents with advanced dementia with family members and nursing home staff | Dementia diagnosis; Functional Assessment Screening Tool stage 6a or higher and stable for 1 month; Australia-Modified Karnofsky Performance Status score 50 or less | Functional Assessment Screening Tool stage 7c combined with functional dependency, predictive of average survival of less than 6 months | Nursing home |
| Andrews et al. 34 | Australia | Qualitative study | 10 family members of advanced dementia residents in a Dementia Specific Unit | Family carers responsible for making health decisions for the person with advanced dementia; 18 years or older; person with advanced dementia to be a resident in the Dementia Specific Unit for at least 3 months | Global Deterioration Scale 6–7 | Nursing home |
| Appollonio et al. 35 | Italy | Cohort study | 103 female nursing home residents with different forms of dementia | Dementia diagnosis; nursing home admission of at least 3 months; Mini-Mental State Examination score of 18 or less; Clinical Dementia Rating score of 1 or more | Nursing home | |
| Cadigan et al. 36 | USA | Cohort study | 323 nursing home residents with advanced dementia | Any dementia diagnosis; Global Deterioration Scale of 7; aged 60 years or older; lived in nursing home for 30 days or longer; an appointed healthcare professional that could communicate in English | Nursing home | |
| Cohen et al. 37 | USA | Randomised controlled trial | Intervention arm: 212 dyads. Control arm: 190 dyads. Dyads defined as healthcare proxies of nursing home residents with advanced dementia | Aged over 65 years; any dementia type; Global Deterioration Scale of 7; lived in nursing home over 90 days; had English speaking proxy | Nursing home | |
| D’Agata and Mitchell 38 | USA | Cohort study | 240 nursing home residents with advanced dementia | Aged 60 years or over; lived 30 days or longer; cognitive impairment due to dementia; Global Deterioration Scale of 7; an appointed healthcare proxy who could communicate in English | Cognitive Performance Scale of 5–6 | Nursing home |
| Eicher et al. 39 | Switzerland | Cohort study | 410 nursing home residents with advanced dementia | A dementia diagnosis; Cognitive Performance Scale of 5–6; informed consent by authorised representatives | Nursing home | |
| Epstein-Lubow et al. 40 | USA | Cohort study | 685,305 people with advanced dementia | Nursing home resident; enrolled in a Medicare fee-for-service plan; older 66 years; Cognitive Performance Scale of 5–6 | Nursing home | |
| Ernecoff et al. 41 | USA | Secondary data analysis | 241 dyads of nursing home residents with late-stage dementia and their family decision-makers | Nursing home resident; 65 years old or older; dementia staged as 5–7 on Global Deterioration Scale; survived a 9-month follow up | Nursing home | |
| Forbes et al. 42 | USA | Qualitative study | 28 family members of nursing home residents with moderately severe to severe dementia | Family member of nursing home resident diagnosed with dementia, with a Cognitive Performance Scale of 4–6 | Nursing home | |
| Froggatt et al. 43 | UK | Randomised controlled trial | 8 nursing homes (6 intervention and 2 control) | Nursing home residents: permanent resident in care home; lack mental capacity; Functional Assessment Screening Tool stage 6–7; has a key worker able to complete outcome tools | Nursing home | |
| Di Giulio et al. 44 | Italy | Cohort study | 482 nursing home residents with advanced dementia | Functional Assessment Screening Tool stage 7c or over; lived in nursing home for at least 6 months | Nursing home | |
| Goldfeld et al. 45 | USA | Cohort study | 323 nursing home residents with advanced dementia | Older than 60 years of age; any dementia diagnosis; Global Deterioration Scale of 7; available English speaking proxies to provide informed consent of their participation and the residents’ participation | Nursing home | |
| Kiely et al. 48 | USA | Impact evaluation study | 189 nursing home residents with advanced dementia and their healthcare proxies | Over 65 years old; Cognitive Performance Scale of 5–6; Global Deterioration Scale of 7; length of stay of 30 days or longer; availability of healthcare proxy willing to participate and communicate in English | Nursing home | |
| Kiely et al. 49 | USA | Cohort study | 323 nursing home residents with advanced dementia and their healthcare proxies | Age above 60 years; any dementia diagnosis; Global Deterioration Scale of 7; available English speaking proxies to provide informed consent | Nursing home | |
| Kobayashi et al. 50 | Japan | Qualitative study | 7 group home administrators (nurses or welfare care-workers) | Group home administrators required to have provided end of life care to residents with dementia in a group home | The period between the moment the group home administrators became aware of the signs of approaching death, and the actual death of the resident | Nursing home |
| Lopez et al. 51 | USA | Qualitative study | 6 nursing home physicians and 14 nurses | Physicians and nurses from nursing homes that care for residents with advanced dementia aged 60 years and above; Global Deterioration Scale of 7 | Nursing home | |
| Reinhardt et al. 53 | USA | Cohort study | 110 family members of nursing home residents with advanced dementia | Dementia diagnosis; Cognitive Performance Scale of 4–6; English or Spanish speaking; not receiving hospice care | Nursing home | |
| Rosemond et al. 54 | USA | Qualitative study | 16 family decision-makers of nursing home residents with advanced dementia who have died | English speaking family decision-makers of nursing home residents who had a dementia diagnosis; older than 65 years old; Global Deterioration Scale of 5–7 | Nursing home | |
| Schmidt et al. 57 | Germany | Qualitative study | 30 nursing home residents with advanced dementia, 42 health professionals and 14 relatives | Residents: Over 65 years old; any dementia diagnosis; Global Deterioration Scale of 6–7; verbal inability to communicate. Health professionals: Directly involved in care of residents with advanced dementia; over 18 years old | Advanced dementia considered the final phase of life | Nursing home |
| Verreault et al. 58 | Canada | Quasi-experimental study | 193 residents with advanced dementia and close family members (97 in intervention, 96 in usual care) | Terminal dementia; Functional Assessment Screening Tool stage 7e to 7f; profiles 13 and 14 on Functional Autonomy Measurement System | Terminal dementia; Functional Assessment Screening Tool stage 7e to 7f; scores 13–14 on Functional Autonomy Measurement System | Nursing home |
| Aminoff 30 | Israel | Outcome evaluation study | 183 patients with advanced dementia admitted to a geriatric ward | Mini-Mental State Examination score 0/30; minimum Functional Independence Measure score 18/126; Functional Assessment Screening Tool stage 7c or higher | Aminoff Suffering Syndrome: high Mini-Mental State Examination score, less than 6-month survival for terminal patients, less than 1-month survival for dying patients, irreversible and intractable aggravation of medical conditions, suffering until deceased | Hospital |
| Aminoff and Adunsky 31 | Israel | Outcome evaluation study | 71 patients with advanced dementia admitted to a geriatric ward | Mini-Mental State Examination score 0/30; minimum Functional Independence Measure score 18/126 | Hospital | |
| Aminoff and Adunsky 32 | Israel | Cohort study | 134 end-stage dementia patients admitted to a long term geriatric ward | Mini-Mental State Examination score 0/30; minimum Functional Independence Measure score 18/126 | Life expectancy of <6 months | Hospital |
| Aminoff et al. 33 | Israel | Impact evaluation study | 103 bedridden patients with end-stage dementia | Mini-Mental State Examination score 0/30; minimum Functional Independence Measure score 18/126 | Hospital | |
| Hanson et al. 47 | USA | Randomised controlled trial | 62 dyads of people with end-stage dementia and family decision-makers on admission to hospital | Patients: Aged 65 years or older; hospitalised with acute illness; dementia diagnosis; Global Deterioration Scale of 5–7; had eligible family decision-maker. Family decision-makers: Legally authorised representative for healthcare decisions; could communicate in English | Hospital | |
| Ouchi et al. 52 | USA | Cohort study | 51 patients aged over 70 with advanced dementia who visited the emergency department | Functional Assessment Screening Tool stage 7 | Hospital | |
| Sampson et al. 55 | UK | Randomised controlled trial | 33 advanced dementia patient-carer dyads under emergency hospital admission (22 intervention arm, 11 control arm) | Functional Assessment Screening Tool stage 6d or above; unplanned admission for a treatable acute medical illness; have an informal carer who can give informed consent for patients | Hospital | |
| Hanrahan et al. 46 | USA | Cohort study | 45 patients with severe dementia | National Hospice Organisation guidelines: Functional Assessment Screening Tool score 7c or above; dependence for all activities of daily living; severe comorbidities related to advanced dementia (i.e. pneumonia, sepsis); unable to maintain sufficient fluid and calorie intake to sustain life | Functional Assessment Screening Tool stage of 7c | Hospice |
| Yeh et al. 59 | UK | Qualitative study | 29 homecare workers and 13 homecare managers who cared for people with dementia | Homecare agency: Providing care for older people in their home, including those with dementia. Homecare workers: To understand English to participate | Last years of life | Home |
| Sampson et al. 56 | UK | Cohort study | 85 people with advanced dementia in nursing homes or their own homes | Dementia diagnosis; over 65 years old; Functional Assessment Screening Tool stage 6e or above | Home and nursing home | |
| Van der Steen et al. 10 | Netherlands | Mixed-method study | 10 caregivers of people with advanced dementia Experts involved in terminal care services in dementia | Caregivers of spouses with advanced dementia from the support group at day centre where spouses previously attended | Last days or weeks or at most, a few months of life | Home and nursing home |
| Sampson et al. 60 | UK | Qualitative study | 20 people with dementia in care homes and hospitals; and 22 staff members involved in dementia care | Functional Assessment Screening Tool stage 6c or higher | Hospital and nursing home |