Resource Use and Disease Course in Dementia (REDIC)
The project Resource use and disease course in dementia (REDIC) was performed according to a request by the Norwegian Directorate of Health. The aim was to evaluate the use of health and social services in primary and secondary healthcare and the extent of informal help that is provided to persons with dementiaby family and friends. Based on these findings, the project should give an estimate on the costs of illness related to dementia in Norway and identify factors predicting resource use and costs. In addition, health related quality of life should be explored and a projection of the future number of personswith dementia should be given.
A total of 5630 persons where included in the project. Of those, 2771 persons haddementia. Detailed data about resource use and costs are collected from 1940 participants. All costs are expressed in 2013 kroner.
There are no Norwegian studies about the prevalence or incidence of dementia. Based on a study on prevalence of dementia from Rotterdam in 1995 and the assumption that these findings would be representative for Norway the prevalence most usual quoted is 70 000. Based on results from a global study from 2013 the estimated prevalence is just under 80 000 persons with dementia in Norway, while data from our report and other Norwegian studies about dementia suggest that the prevalence might be even higher. Our results suggest as well that there are a number of people with dementia that lack diagnosis, indicating an even higher prevalence.
Based on European studies Alzheimer Europe has estimated the prevalence of dementia in Norway as 78 000 in 2013. In our report this is the prevalence nation-wide calculation are based on. However, we want to point out the necessity for a Norwegian study on the prevalence of dementia.
We have calculated the entire course of the disease to be 8.1 years. Depending on the point of time when the diagnosis is made and resource use, we divided the disease course into three stages:
(i) From the onset of symptoms until diagnosis is made, mean duration 3.0 years.
(ii) From diagnosis to admission to nursing home, mean duration 3.0 years.
(iii) Nursing home stay, mean duration 2.1 years.
As a rough estimate, we assume that 85 to 90% of persons with dementia will be admitted to long-term care during the course of the disease.
Our data indicate that about 80% have mild dementia when diagnosis is made while 20% have moderate dementia. During the interval between diagnosis and nursing home admission there are 75% with mild dementia, 20% with moderate dementia and5% with severe dementia. At admission to nursing home, there are 30% with mild,50% with moderate and 20% with severe dementia.
Costs per person with dementia during the whole course of the disease
Over the entire course of the disease there will arise costs of 29 million Norwegian kroner for health and social services per person with dementia. The main costfactors are in-hospital stays which account for about 11% of the total costs,home nursing which accounts for about 20% of the costs, and nursing home staywhich accounts for 60% of the total costs. The remaining 9% are distributed among the other health and social services. Seventy-six percent of the costs are borne by the municipality and 12% by the state, while 12% are out-of-pocket contributions. Our report does not include costs for informal care, while alternative models are discussed in the sensitivity analysis.
Costs for dementia in Norway per year
Costs per person with dementia per year is estimated to be about 360 000 kroner.Based on a prevalence of 78 000 the total costs for dementia will amount to about 28 billion kroner per year.
Need for caregivers
During the whole course of the disease, there is a need for 3.37 full-time equivalents(FTEs) per person with dementia: 0.14 FTEs per year during the interval from symptom onset until diagnosis is made, 0.24 FTEs per year during the interval from diagnosis to nursing home admission and 1.06 FTEs during nursing homestay. Based on a prevalence of 78 000 in Norway, there are 32 451 FTEs of caregiver work allocated to dementia per year.
Resource use within primary health care sector
General practitioner: Persons with or without dementia visit the GP as frequently, about 5.6 times a year.
Home nursing is provided to about half of community dwelling persons with dementia. Monthly costs are about 6400 kroner during the interval from disease onset to diagnosis and about 10 800 kroner during the interval between diagnosis and nursing homeadmission.
Daycare centers are visite done to two times per week by about 20% of community-dwelling persons with dementia.
Nursing home: About 50% ofpersons with dementia are admitted to nursing home within three years after a diagnosis is made. Nursing home stay is accounts for about 70% of all costs within the primary care sector.
Anti-dementia drugs: Forty-eight percent of persons with dementia use anti-dementia drugs once the diagnosis of dementia is made, while the proportion is 3% in persons who lack a diagnosis.
Loss of income in informal care givers: About half of the informal care givers pursue a regular job. Loss of income by family increases from 860 kroner per month when diagnosis is made to about 7300 kroner per month at nursing home admission.
Loss of income in persons with dementia: Compared to the general population there is a substantial share of persons with dementia outside work force or on sick-leave. The mean loss of income in persons with dementia 75 years or younger is 15 417 kroner per month.
Resource use within the secondary health care sector
There was no significant difference between persons with or without dementia regarding in-hospital stay, while persons without dementia visited outpatient clinics more often. In home dwelling persons with dementia, costs forspecialist care amounted to 2000 to 4500 kroner per month. During nursing home stay these costs decreased to 1350 kroner.
The majority of persons with dementia (90%) receive informal care by relatives or friends. Already when the diagnosis is made a mean of 60 to 80 hours of informal help are provided per month. During the last period before admission to nursing home the amount of informal care increases to 160 hours per month, equivalent to a whole FTE. During nursing home stay do relatives provide help of 6.7 hours per month, indicating that the need for care in general is satisfied by the institution’s staff.
Level of functioning shows the strongest association with increased resource use,both formal and informal care. Furthermore, neuropsychiatric symptoms,cognitive impairment and general health are clinical factors associated withincreased resource use. Living alone is associated with increased use ofmunicipal health and care services, but with less caregiver time. This is probably because the closest caregiver usually is living together with the patient.
The analysis of demographic and organizational factors on the municipal level shows that costs are lower in municipalities with a higher population. Our data indicate as well that a high coverage ratio of nursing home places is notrelated to higher overall cost levels for the municipalities. However, this finding is not significant the multivariate analysis.
Based on population projections that assume a medium alternative the number of persons with dementia will have increased to about 97 000 by 2025 and to 300 000 by 2100, equivalent to 4 % of the total population in Norway. Assumed that the use of nursing home remains unchanged in the future there will thus be a need for 52 000 nursing home places for persons with dementia in 2040 and 107 000 places in2100.