Quality of Life in relation to neuropsychiatric symptoms in Alzheimer's disease: 5‐year prospective ALSOVA cohort study

Abstract

Objective: To examine the association between neuropsychiatric symptoms (NPS) with self-and caregiver-rated Quality of Life (QoL) for patients with Alzheimer's disease (AD) during a 5-year follow-up. Methods: The ALSOVA 5-year follow-up study included, at baseline, 236 patients with either very mild (Clinical Dementia Rating Scale (CDR) 0.5), or mild (CDR 1) AD, together with their caregivers from three Finnish hospital districts. QoL was evaluated using patient self-reported, and caregiver-rated, QoL in AD (QoL-AD) scores. NPS were assessed using the Neuropsychiatric Inventory (NPI), and AD severity was evaluated using the CDR, with cognition tested by the mini-mental state examination. The performance of daily activities was assessed using the Alzheimer's Disease Cooperative Study-Activities of Daily Living Inventory. Results: Over the 5-year follow-up period, patient self-reported QoL-AD scores did not change significantly (p = 0.245), despite increases in their NPS. However, caregiver-rated patient QoL-AD scores declined significantly (p ≤ 0.001), as total NPI scores increased during follow-up. No NPS at baseline, and only apathy at follow-up, correlated significantly (p = 0.007) with patient self-rated QoL-AD scores. Caregiver-rated patient QoL-AD scores correlated significantly with most NPS, especially (p ≤ 0.001) apathy, agitation, anxiety, irritability, depression, and delusions at baseline, and delusions, hallucinations, apathy, appetite disturbances, and anxiety during follow-up. Conclusions: Patient rated QoL-AD scores are an unreliable tool with which to evaluate the success of therapy for NPS. Instead, caregiver-rated scores for patients correlated well with NPI scores, and health care professionals in the clinic should preferentially use these.

Norwegian version of the rating anxiety in dementia scale (RAID-N): a validity and reliability study

“…There is evidence indicating discrepancies between self and proxy-rated QoL of PWD. Proxy-rated QoL may be influenced by caregivers' or family members' own perspectives of QoL [15,16]. However, in the nursing homes, most of the residents with dementia have more frequent and direct contacts with the nursing care staff during a day than their own family members.…”

Determinants of self‐ and carer‐rated quality of life and caregiver burden in Alzheimer disease

“…apathy, and that QoL self-ratings are less affected by these symptoms 35,36. These results suggest that age at onset of clinical disease and ADL are shared determinants of self-and carer-rated QoL and that patient ratings are more affected by the housing situation, whereas carer ratings are influenced more by noncognitive symptoms of AD.…”

“…The present study also confirms previous findings that QoL rated by carers is more associated with the severity of BPSD, in particular depression and apathy, and that QoL self-ratings are less affected by these symptoms. 35,36 Other authors have argued that self-rated QoL may therefore not be a reliable measure, at least not for assessing treatment effects on neuropsychiatric symptoms, possibly because of increasing difficulties with completing the questionnaires as the disease progresses. 37 Our finding of carer-rated QoL being worse when patients and carers live together (eg, if they are spouses) may suggest that carers who are more aware of the affected individual's deficits also think that their QoL is worse; alternatively, carers who are more burdened by spending more time together with the patient rate their QoL lower, which is also supported by our findings.…”

Improving Quality of Life in Caregivers of Alzheimer Dementia Patients- A Stepwise Approach

“…[45] ALSOVA study 5-year follow-up detected no significant changes in very mild or mild AD patient self-reported quality of life, despite their increase in the neuropsychiatric symptoms. [46] Nevertheless, caregiverrated patient quality of life declined significantly, as total NPI scores increased during follow-up, and apathy at follow-up correlated significantly with patient self-rated quality of life score. [46] Baseline high NPI scores are important predictors for a loss of quality of life in AD patients according to a multiple logistic regression analysis in a 4-year follow-up.…”

“…[46] Nevertheless, caregiverrated patient quality of life declined significantly, as total NPI scores increased during follow-up, and apathy at follow-up correlated significantly with patient self-rated quality of life score. [46] Baseline high NPI scores are important predictors for a loss of quality of life in AD patients according to a multiple logistic regression analysis in a 4-year follow-up. [47] Also, higher NPI total scores were associated with a more negative rating of Quality of life-Alzheimer's Disease (QoL-AD) among caregivers, and also with a smaller negative effect on patients' self-rating.…”