TY - JOUR
T1 - Identifying and managing apathy in people with dementia living in nursing homes
T2 - a qualitative study
AU - Nijsten, Johanna M H
AU - Smalbrugge, Martin
AU - Plouvier, Annette O A
AU - Koopmans, Raymond T C M
AU - Leontjevas, Ruslan
AU - Gerritsen, Debby L
N1 - © 2023. The Author(s).
PY - 2023/12
Y1 - 2023/12
N2 - BACKGROUND: Although apathy is common in people with dementia and has profound negative effects, it is rarely diagnosed nor specifically treated in nursing homes. The aim of this study is to explore experiences in identifying and managing apathy from the perspectives of people with dementia and apathy (PwA), family caregivers (FCs) and professional caregivers (PCs).METHODS: Descriptive qualitative study with purposive sampling, comprising eleven semi-structured in-depth interviews with PwA, FCs or PCs and focus groups with twelve PCs in Dutch nursing homes. Seventeen additional in-depth interviews with caregivers were held, after signals of increasing apathy during the first Covid-19 lockdown. Using an inductive approach, data was analysed thematically to explore the experiences in identifying and managing apathy from the perspective of different stakeholders.RESULTS: Three themes were identified: 1) the challenge to appraise signals, 2) the perceived impact on well-being, 3) applied strategies to manage apathy. Although participants described apathy in line with diagnostic criteria, they were unfamiliar with the term apathy and had difficulties in appraising signals of apathy. Also, the perceived impact of apathy varied per stakeholder. PwA had difficulties reflecting on their internal state. FCs and PCs experienced apathy as challenging when it reduced the well-being of PwA or when they themselves experienced ambiguity, frustration, insecurity, disappointment or turning away. Dealing with apathy required applying specific strategies that included stimulating meaningful contact, adjusting one's expectations, and appreciating little successes.CONCLUSIONS: When addressing apathy in nursing homes, it is important to consider that a) all stakeholders experience that appraising signals of apathy is challenging; b) apathy negatively influences the well-being of people with dementia and especially their FCs and PCs; and c) FCs and PCs can successfully, albeit temporarily, manage apathy by using specific strategies.
AB - BACKGROUND: Although apathy is common in people with dementia and has profound negative effects, it is rarely diagnosed nor specifically treated in nursing homes. The aim of this study is to explore experiences in identifying and managing apathy from the perspectives of people with dementia and apathy (PwA), family caregivers (FCs) and professional caregivers (PCs).METHODS: Descriptive qualitative study with purposive sampling, comprising eleven semi-structured in-depth interviews with PwA, FCs or PCs and focus groups with twelve PCs in Dutch nursing homes. Seventeen additional in-depth interviews with caregivers were held, after signals of increasing apathy during the first Covid-19 lockdown. Using an inductive approach, data was analysed thematically to explore the experiences in identifying and managing apathy from the perspective of different stakeholders.RESULTS: Three themes were identified: 1) the challenge to appraise signals, 2) the perceived impact on well-being, 3) applied strategies to manage apathy. Although participants described apathy in line with diagnostic criteria, they were unfamiliar with the term apathy and had difficulties in appraising signals of apathy. Also, the perceived impact of apathy varied per stakeholder. PwA had difficulties reflecting on their internal state. FCs and PCs experienced apathy as challenging when it reduced the well-being of PwA or when they themselves experienced ambiguity, frustration, insecurity, disappointment or turning away. Dealing with apathy required applying specific strategies that included stimulating meaningful contact, adjusting one's expectations, and appreciating little successes.CONCLUSIONS: When addressing apathy in nursing homes, it is important to consider that a) all stakeholders experience that appraising signals of apathy is challenging; b) apathy negatively influences the well-being of people with dementia and especially their FCs and PCs; and c) FCs and PCs can successfully, albeit temporarily, manage apathy by using specific strategies.
KW - Humans
KW - Apathy
KW - Dementia/diagnosis
KW - Nursing Homes
KW - Qualitative Research
KW - Emotions
KW - Caregivers
U2 - 10.1186/s12877-023-04422-y
DO - 10.1186/s12877-023-04422-y
M3 - Article
C2 - 37946109
SN - 1471-2318
VL - 23
SP - 1
EP - 12
JO - BMC Geriatrics
JF - BMC Geriatrics
IS - 1
M1 - 727
ER -