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HELSEVEL-H-Gode og effektive helse-, omsorgs- og velferdstjenester

Dementia: Use of health-care resources and carer burden over time

Awarded: NOK 4.1 mill.

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Project Period:

2012 - 2020


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This project has investigated the use of health resources and caregiver burden among people with Alzheimer's disease and Lewy body dementia. Further, the project has highlighet which factors are cost-driving, how the caregiver burden is and how long after the diagnosis the patients are admitted to a nursing home or admitted to hospital. In addition, it has investigated how long they live after the diagnosis of dementia. Furthermore, the relationship between specific neuropsychiatric symptoms of dementia and drug use has been analyzed. At the time of diagnosis, 96% of patients used one or more drugs and 45% of them used five or more drugs. Psychotropic drugs such as antidepressants, antipsychotics and benzodiazepines were used by 45% of patients. The majority of this consumption was related to the use of antidepressants (32%). Few patients used potentially inappropriate drugs and few serious drug interactions were identified, indicating that the prescription was acceptable. Nevertheless, several of the patients were prescribed psychotropic drugs despite the fact that these drugs have limited evidence of the benefits of dementia. Five years after the diagnosis of dementia, 78% of the patients had been admitted at least one time. They also had more admissions in the first year after the dementia diagnoses compared with the general population of the same age. This applied to both planned and unplanned admissions. Patients with Lewy body dementia and Alzheimer's disease had around 2 times and 1.3 times as many admissions, respectively, as the general population. Furthermore, patients with Lewy body dementia had shorter time until first admission, more unplanned hospitalizations, more unplanned hospital days compared to Alzheimer's disease. Patients with dementia with Lewy body had a shorter time to be admitted to a nursing home. They were admitted to a nursing home almost two years before those diagnosed with Alzheimer's disease. Use of cholinesterase inhibitors was associated with a reduced risk, while use of antipsychotics was associated with an increased risk of nursing home hospitalization among people with Lewy body dementia. People with dementia were also found to have a higher mortality rate than the general population. In addition, people with Lewy body dementia had significantly shorter life expectancy after diagnosis compared with people with Alzheimer's disease (4.4 years and 6.9 years, respectively, p <.001). Neuropsychiatric symptoms of dementia include a variety of psychiatric symptoms and behavioral disorders. A summary of previous research was conducted. Here it was found that irritability, agitation, altered circadian rhythm, anxiety, apathy and delusions are the neuropsychiatric symptoms relatives experience particularly stressful. Diversity of study design and measuring instrument, however, made it difficult to draw definite conclusions. Based on data from DemVest, apathy was found to be the single symptom that contributes most to stress among caregivers. The differences between Alzheimer's disease and Dementia with Lewy body are few, but there is greater variance among relatives of people with dementia with Lewy body. In addition, several neuropsychiatric symptoms were identified as important contributors to stress among relatives of people with DLB. At the time of diagnosis, it was found that patients with dementia with Lewy body had more and more intense neuropsychiatric symptoms compared with Alzheimer's disease. In particular, the frequency of hallucinations and apathy was higher in patients with Lewy body dementia compared with Alzheimer's disease.

Prosjektet har bidratt med ny kunnskap blant personer med ulike former for demens og er et viktig bidrag både til forskningsfeltet og klinisk praksis Områder hvor prosjektet har bidratt med ny kunnskap er blant annet: - Legemiddelbruk på diagnosetidspunktet - Prognose relatert til sykehjemsinnleggelse,sykehusinnleggelse og overlevelse - Sammenhengen mellom pårørendestress og nevropsykiatriske symptomer - Helserelaterte kostnader er høyere for pasienter med demens med Lewylegeme og øker markant i årene etter demensdiagnosen

The aim of the study is to evaluate the burden of dementia, by estimating the use of health care services over time and identifying the key factors which are driving this. In addition, we want to characterize determinants of burden of carers, and safety-i ssues related to the use of psychotropic drugs in people with dementia. A critical challenge will be to measure municipal health-costs in a reliable way. In collaboration with the health-administration in the municipalities in the study area, we will admi nister a detailed questionnaire assessing the use of municipal health and care-services, enabling us to retrieve detailed, reliable and complete information about the use of health care services and the evolving costs. In addition, a qualitative interview of a representative group of carers will be performed for in-depth knowledge about how the health-care system is perceived. In order to provide valid data, and to identify the development of health-care use over the disease course as well as to identif y the cost-driving factors, a large and representative patient group of people with dementia will have to be followed longitudinally. To this end, the project is based on the DemVest cohort, consisting of 250 home-dwelling patients with mild dementia fol lowed prospectively from diagnosis with annual assessments including carer burden, drug-use, and use of health-care services over 10 years starting in 2005. The results from this project promises to provide key knowledge about strengths and limitations of the health-care system for home-dwelling people with dementia and their family carers. Such knowledge is critical in order to improve quality and cost-efficiency of the organization and delivery of health-care services for people with dementia.

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HELSEVEL-H-Gode og effektive helse-, omsorgs- og velferdstjenester