Determinants of informal care time, distress, depression, and quality of life in care partners along the trajectory of Alzheimer's disease

Arenda Mank; Ingrid S van Maurik; Judith J M Rijnhart; Hanneke F M Rhodius-Meester; Leonie N C Visser; Afina W Lemstra; Sietske A M Sikkes; Charlotte E Teunissen; Elsmarieke M van Giessen; Johannes Berkhof; Wiesje M van der Flier

doi:10.1002/dad2.12418

Determinants of informal care time, distress, depression, and quality of life in care partners along the trajectory of Alzheimer's disease

Alzheimers Dement (Amst). 2023 Apr 25;15(2):e12418. doi: 10.1002/dad2.12418. eCollection 2023 Apr-Jun.

Authors

Arenda Mank^{1

2

3}, Ingrid S van Maurik^{1

2

3}, Judith J M Rijnhart⁴, Hanneke F M Rhodius-Meester^{1

5

6}, Leonie N C Visser^{7

8}, Afina W Lemstra^{1

2}, Sietske A M Sikkes^{1

2}, Charlotte E Teunissen^{2

9}, Elsmarieke M van Giessen¹⁰, Johannes Berkhof³, Wiesje M van der Flier^{1

2

3}

Affiliations

¹ Alzheimer Center Amsterdam, Department of Neurology Vrije Universiteit Amsterdam Amsterdam UMC VUmc Amsterdam the Netherlands.
² Amsterdam Neuroscience Neurodegeneration Amsterdam the Netherlands.
³ Amsterdam UMC Vrije Universiteit Amsterdam Department of Epidemiology and Data Science Amsterdam Public Health Institute Amsterdam the Netherlands.
⁴ College of Public Health University of South Florida Tampa Florida USA.
⁵ Department of Internal Medicine Geriatric Medicine Section Vrije Universiteit Amsterdam Amsterdam UMC Amsterdam the Netherlands.
⁶ Department of Geriatric Medicine The Memory Clinic Oslo University Hospital Oslo Norway.
⁷ Department of Medical Psychology Amsterdam UMC, AMC University of Amsterdam Amsterdam the Netherlands.
⁸ Amsterdam Public Health Research Institute Quality of Care Amsterdam the Netherlands.
⁹ Neurochemistry Laboratory Department of Clinical Chemistry Vrije Universiteit Amsterdam UMC, VUmc Amsterdam the Netherlands.
¹⁰ Department of Radiology & Nuclear Medicine Vrije Universiteit Amsterdam Amsterdam UMC, VUmc Amsterdam the Netherlands.

Abstract

Introduction: We evaluated determinants associated with care partner outcomes along the Alzheimer's disease (AD) stages.

Methods: We included n = 270 care partners of amyloid-positive patients in the pre-dementia and dementia stages of AD. Using linear regression analysis, we examined determinants of four care partner outcomes: informal care time, caregiver distress, depression, and quality of life (QoL).

Results: More behavioral symptoms and functional impairment in patients were associated with more informal care time and depressive symptoms in care partners. More behavioral symptoms were related with more caregiver distress. Spouse care partners spent more time on informal care and QoL was lower in female care partners. Behavioral problems and subtle functional impairment of the patient predisposed for worse care partner outcomes already in the pre-dementia stages.

Discussion: Both patient and care partner determinants contribute to the care partner outcomes, already in early disease stages. This study provides red flags for high care partner burden.

Keywords: Alzheimer's disease; caregiver; dementia; depression; informal care time; mild cognitive impairment; quality of life; subjective cognitive decline.