Resource Use and Disease Course in Dementia (REDIC)
Follow-up REDIC-Nursing Home (REDIC-NH)
The project Resource Use and Disease Course in Dementia (REDIC) was performed according toa request by the Norwegian Directorate of Health. The main report was publishedin November 2015.
One of the samples examined was the REDIC-NH cohort, 696 persons included at admission to nursing home (NH). The sample has since been followed with regular examinations. The aim of the REDIC-NH project was to analyze the use of direct care in nursing home residents and to explore factors that are associated to an increased use of direct care. Second, mortality at NH and factors predicting death should be examined. Third, health related quality of life (HRQoL) during the NH stay, and factors associated to HRQoL, should be explored.
Six-hundred and ninety participants where the date for admission to NH was known were included into the study. Of those, 574 (83%) had dementia at admission to NH. The participants were examined at admission (baseline, BL) and at follow-up at 6 months (US6), 12 months (US12), 18 months (US18), 24 months (US24), 30 months (US30), and 36 months (US36). One hundred and eighty-eight persons were followed up to US36, while 410 died during the observation period and 92 persons dropped out for other causes.
Diagnosis of dementia at admission to NH
At admission to NH, 83.8 of the residents had dementia. Of those, a diagnosis of dementia was registered in the medical records for 55.9%.
The use of direct care time
At a NH, there are activities that are common for the residents (like meals, staying in common areas etc.), while other activities require one-to-one contact with the staff (like dressing or supervising the resident), called direct care. Direct care is subdivided into help with personal activities of daily living (PADL) like washing or dressing, help with instrumental ADL (IADL) like using a telephone or taking care of one’s own economy, and supervision that comprises tasks like shielding the resident from harm, helping with orientation, or interrupting behavior that might interfere with the patient’s or others autonomy. REDIC-NH reports direct care time according to the data collected at US6 to US36.
We found that direct care time decreases during NH stay from a mean of 76 hours per month at US6 to 50 hours per month at US36. Help with PADL constitutes the largest part of direct care, between 50% and 60%. In most residents (92%) the use of direct care remains stable throughout the NH stay, while some residents receive much more direct care in the beginning of their stay with a decline in received direct care later, and in other residents the use of direct care is increasing during NH stay.
On open wards, 50% of the staff’s working time is spent as direct care time, while it is 70% at special care units for persons with dementia (SCU).
Demographic and clinical factors that are related to direct care time
Younger residents receive more direct care than older residents. Residents that have lived together with a partner before admission to NH receive more direct care up to US24 than residents that lived alone. Persons with dementia at admission to NH receive more direct care than persons without dementia, and persons with more severe dementia receive more direct care than persons with less severe dementia. Low ADL-functioning is related to a higher use of direct care time. Neuropsychiatric symptoms increase the use of direct care time. Residents with impaired hearing receive more direct care than residents with normal hearing.
We found no difference between men and women in regard of direct care time. Mortality, somatic health, comorbidity and vision are not related to the use of direct care time.
Organizational factors associated to the use of direct care time
In general, organizational factors, like the size of the municipality or organization of the NH, had a smaller impact on direct care time than patient characteristics.
We found that SCU residents receive more direct care than residents of open wards. SCU have a higher staff ratio than open or short-term wards, and we found that residents on wards with a higher staff ratio receive more direct care up to US18 than resident on wards with a lower staff ratio. Citizens from larger municipalities receive more direct care at US6, but this difference cannot be found at later follow-ups.
Patient per doctor ratio does not differ between different types of ward, and it shows no relation to the use of direct care time. Size of the NH or the ward is not related to direct care time. About 25% of the residents are relocated at least once during their NH stay, but relocation is not associated to the use of direct care time.
Mortality at NH
Of 690 participants, 410 (69 %) died during the observation period. Median survival at NH was 2.2 years. The rate of mortality was stable during the observation period with an annual mortality rate of about 32%
Demographic and clinical factors associated with mortality
Factors associated with higher mortality were higher age, poorer physical health, more severe dementia and poorer ADL-function.
Gender and neuropsychiatric symptoms were not associated with increased mortality.
Organizational factors associated with mortality
The organizational factors explored in this study had no impact on mortality.
Costs for NH stay
Given a median survival of 2.2 years and costs of 814 000 NOK per bed per year, costs for NH stay are around 1.8 million NOK per NH resident.
Due to a higher staff ratio at an SCU than an open ward, the costs are about 130 000 NOK higher per year in a SCU than on an open ward. Longer survival and higher use of direct care will be cost driving. This will imply on younger persons with severe dementia and a high degree of neuropsychiatric symptoms. Persons that require hiring of extra staff to meet their particularly high needs for direct care time will potentially trigger high extra costs.
Health related quality of life
HRQoL was measured by the instrument EQ-5D where quality of life is expressed as a utility score between 1=excellent health and 0=dead. Scores <0 are as well possible, and signify conditions considered worse than death.
Persons with dementia and health care workers rate the HRQoL of persons with dementia differently. In most cases in this study, HRQoL was rated by health care workers and not by the patients themselves (70% at BL to 90% at US36). We analyzed HRQoL rated by health care workers and the association with demographic and clinical variables.
HRQoL decreases over time, from a mean utility score of 0.52 at BL to a utility score of 0.28 at US36. HRQoL decreases with poorer physical health, more severe dementia, poorer ADL-functioning and more neuropsychiatric symptoms, especially affective symptoms like anxiety and depression.
The findings in this report confirm the findings from the main report Resource Use and Disease Course in Dementia from 2015 . The length of NH stay was at a median 2.2 years, leading to costs of 1.8 million NOK per resident. Analysis of clinical and organizational factors shows that the amount of direct care time is governed mainly by patients’ characteristics and not the organizational conditions. One gets the impression that the residents of the NHs in this study receive individualized and person-centered care, since 50% of the nursing time is rendered as direct care in open wards, and 70% in SCUs. The survival in NH was related to patient characteristics, and not to organizational conditions.