Caregiver burden in mild cognitive impairment due to Alzheimer's disease—a longitudinal study
Margarida Rebolo
Faculdade de Medicina, Universidade de Lisboa, Lisbon, Portugal
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Alexandre de Mendonça
Faculdade de Medicina, Universidade de Lisboa, Lisbon, Portugal
Correspondence: Alexandre de Mendonça, Faculdade de Medicina, Universidade de Lisboa, Lisboa. E-mail: [email protected]; Graça Melo, Nursing Research, Innovation and Development Centre of Lisbon (CIDNUR), Escola Superior de Enfermagem de Lisboa, Universidade de Lisboa, Lisboa. E-mail: [email protected]
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Graça Melo
Nursing Research, Innovation and Development Centre of Lisbon (CIDNUR), Escola Superior de Enfermagem de Lisboa, Universidade de Lisboa, Lisbon, Portugal
Correspondence: Alexandre de Mendonça, Faculdade de Medicina, Universidade de Lisboa, Lisboa. E-mail: [email protected]; Graça Melo, Nursing Research, Innovation and Development Centre of Lisbon (CIDNUR), Escola Superior de Enfermagem de Lisboa, Universidade de Lisboa, Lisboa. E-mail: [email protected]
Search for more papers by this authorMargarida Rebolo
Faculdade de Medicina, Universidade de Lisboa, Lisbon, Portugal
Search for more papers by this authorCorresponding Author
Alexandre de Mendonça
Faculdade de Medicina, Universidade de Lisboa, Lisbon, Portugal
Correspondence: Alexandre de Mendonça, Faculdade de Medicina, Universidade de Lisboa, Lisboa. E-mail: [email protected]; Graça Melo, Nursing Research, Innovation and Development Centre of Lisbon (CIDNUR), Escola Superior de Enfermagem de Lisboa, Universidade de Lisboa, Lisboa. E-mail: [email protected]
Search for more papers by this authorCorresponding Author
Graça Melo
Nursing Research, Innovation and Development Centre of Lisbon (CIDNUR), Escola Superior de Enfermagem de Lisboa, Universidade de Lisboa, Lisbon, Portugal
Correspondence: Alexandre de Mendonça, Faculdade de Medicina, Universidade de Lisboa, Lisboa. E-mail: [email protected]; Graça Melo, Nursing Research, Innovation and Development Centre of Lisbon (CIDNUR), Escola Superior de Enfermagem de Lisboa, Universidade de Lisboa, Lisboa. E-mail: [email protected]
Search for more papers by this authorAlexandre de Mendonça and Graça Melo are last senior co-authors.
ABSTRACT
Background
Caregivers of people with mild forms of cognitive decline, namely mild cognitive impairment (MCI), are subjected to caregiver burden. In recent years, a major breakthrough was the possibility of diagnosing Alzheimer's disease (AD) reliably in patients that present with MCI, as required for the use of the recently approved anti-amyloid therapies. We aimed to examine the caregiver burden in caregivers of patients with MCI due to AD, describe how caregiver burden evolves with time, and determine caregiver baseline factors that might predict the progression of burden.
Methods
Twenty-five dyads of community-dwelling patients and caregivers were consecutively recruited from a memory outpatient clinic, after receiving the diagnosis of MCI due to AD. Caregiver burden was measured with the Zarit Burden Inventory (ZBI), life satisfaction with Satisfaction With Life Scale, depressive symptoms with the Centre for Epidemiological Studies-Depression Scale (CES-D), anxiety symptoms with the State Anxiety Subscale of the State–Trait Anxiety Inventory (STAI) and patient neuropsychiatric symptoms with the Neuropsychiatric Inventory (NPI).
Results
At baseline, the mean ZBI score was 24.5 ± 15.2 and correlated positively with caregiver CES-D and STAI scores and with patient neuropsychiatric symptoms (NPI-frequency × severity) and distress felt by the caregiver (NPI-distress). At follow-up (17.7 ± 9.4 months) the mean ZBI score increased to 31.4 ± 16.3 (P < 0.001); however, no baseline caregiver or patient characteristics were identified associated with the evolution of caregiver burden.
Conclusions
Caregivers of patients who received a diagnosis of MCI due to AD report substantial burden, that increased with time. Future studies should investigate caregiver characteristics that may predict burden progression and help delineate strategies to minimise it.
Open Research
DATA AVAILABILITY STATEMENT
Data available upon request from the authors.
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