Pathways through Care - The association between municipal health services and disease course in dementia

The study "Pathways through care, the association between municipal health care services and disease course in dementia" was based on a sample of 696 nursing home patients included at admission to the nursing home. The inclusion started in July 2013 and was completed in August 2014. The main objective of the study was to examine how individual and organizational variables were associated with the patients Quality of Life and the nursing home's way of giving personcentred care. At inclusion, patients were assessed with respect to cognition, degree of dementia, quality of life, neuropsychiatric symptoms, ADL functioning, pain, physical health, drug use and the use of health resources. Data collection was done by standardized assessment tools that are widely used in research as well as in clinic. The assessments were repeated every six months for three years or until the patient died. For each nursing home a set of organizational variables were collected through interviews with the nursing home staff. Variables assessed were number of staff, unit type, financing, bed number, education of staff, sick leave, management structure, and quality indicators. Standardized assessment tools provided data on the degree of person-centered care, job satisfaction and characteristics of the physical environment. The assessments were carried out by healthcare professionals who had undergone at least two days of training in the use of assessment tools. The study was cooperating with international renowned research groups in England and the Netherlands. Parallel data collections with corresponding assessment tools were taking place in these countries, providing opportunities for comparing dementia care across the three European countries. This study was unique as it collected a broad set of variables on organizational level of the nursing home and at the patient level. By analyzing how organizational factors affected the dementia disease course, the study will provide important information for planning of care for people with dementia.

Prosjektet har oppnådd virkninger og effekter på flere plan. Gjennom datainnsamlingen har flere hundre sykepleiere og andre ansatte fra 47 sykehjem fått opplæring i kartlegging av sine pasienter. Dette, sammen med økt kunnskap om demens på de samme sykehjemmene, har bidratt til en bedre behandling av pasientene. De ansatte har videre besvart spørreskjema om eget arbeidsmiljø og personsentrert omsorg, som har økt bevisstheten rundt disse temaene. Kartlegging av det fysiske miljøet på sykehjemmene har økt sykehjemmenes fokus på de fysiske omgivelsene og hvordan omgivelsene påvirker pasienter og ansatte. Resultatene fra studiene er formidlet til andre forskere, klinikere og beslutningstakere gjennom kurs, konferanser og medieoppslag, noe som vil komme fremtidige sykehjemspasienter til gode.

Dementia is a chronic progressive disorder which causes gradual loss of functioning. The increasing number of persons with dementia is one of the main challenges for the health care system. There exists no curative treatment for dementia, but a careful pl anning of the provision of care may affect the disease course and relieve some of the distress to the person with dementia and their carers. The knowledge about how organisational and individual factors affect disease course is limited. This project inclu des persons at admission to the nursing home. Data on disease course before admission are collected retrospectively and the participants are followed with regular assessments over a three-year period. In addition to clinical measures on an individual lev el a thorough assessment of organisational factors in the municipalities will be performed. This information will be collected through public statistics, direct observation and interviews with leaders or decision makers and health care workers. The projec t will be able to estimate the respective contribution of individual and organisational factors in determining the pathway through care and the disease course of persons with dementia. The substantial data collection has started and is financed through pr ograms initiated by the Norwegian Health Directorate and Innlandet Hospital Trust. The present application focuses on analyses of disease course in terms of level of functioning, mortality and quality of life as well as transitions between levels of care as outcome variables. The planning of the project is done in cooperation with representatives of the users of the care system and decision makers in the municipality, securing the inclusion of relevant variables in the analysis. The results will add sign ificantly to the international knowledge base and give health care providers valuable information in order to allocate resources in order to give maximum benefit for the user.