The caregiving phenomenon and caregiver participation in dementia.

BACKGROUND: Dementia presents barriers to the collaboration between individuals and the healthcare system. Caregivers perform multiple functions helping patients with basic and instrumental activities but also communicating and mediating the dyads' needs within the broader social group. Interventions focusing on caregivers show that caregiver burden can be reduced, improving patient outcomes in a cost-effective way, but the generalisation of these findings is limited by several factors such as low participation rates of caregivers in studies. There is a global push to increase patient participation in health care, but this can be difficult for patients with dementia. Caregiver participation has arisen as a substitute, but there is a lack of standardised definitions, goals and outcome measurement tools for this participation. METHODS: In 2015, the Swedish Association of Local Authorities and Regions commissioned a study on possibilities of increasing caregiver participation within the Swedish Dementia Registry (SveDem). This discussion paper updates and adapts that report, aiming to broadly summarise the caregiving phenomenon in order to provide a backdrop for clinicians seeking to understand the legal, ethical and practical considerations of caregiver participation in dementia. Relevant literature on caregiver participation is presented, and its definition, extent and practical implementation are discussed. DISCUSSION: The Swedish legal framework compels care providers to facilitate patient and caregiver participation in dementia and provides support to caregivers through the local level of government, but further work is needed to clarify and define the extension and form that this participation must take in clinical practice. Advanced directives are one step in extending patient participation to the period of advanced dementia. CONCLUSION: Little research exists on caregiver participation. There is a need to develop a framework for caregiver and patient participation to determine the extent, type and form that such participation should take in health care, research and quality initiatives pertaining to persons with dementia.

Costs of diagnosing dementia: results from SveDem, the Swedish Dementia Registry.

OBJECTIVE: Diagnostic of different dementia disorders is an important part of dementia care. So far, there is limited knowledge about how dementia is diagnosed in clinical routine, and there are few reports on the costs of the dementia work-up leading to a diagnosis. Here, we examine the costs of diagnostic dementia work-up in Sweden. METHODS: The analyses were made on the data from the Swedish Dementia Registry (SveDem) and included 11,561 dementia patients diagnosed during 2007-2010, mainly not only in specialist care (SC) (n = 53) but also some primary care centres (PC). We have studied differences in the use of investigations for dementia diagnostics such as cognitive tests, blood and cerebrospinal fluid analyses, radiological examinations and assessments of functions. Unit costs for each diagnostic investigation were combined with the use of these investigations for all cases in the database. Results are presented versus gender and stratified for age. RESULTS: The number of diagnostic tests performed was 2.8 in PC and 4.6 in SC. The average costs (€1 = SEK9 and US$1 = SEK7 in 2010) were SEK6777 in PC and SEK11,682 in SC. Age was the strongest cost predictor while there were no gender differences. There were also regional differences, ranging from SEK8231 to SEK14,734 in SC. CONCLUSIONS: The SveDem database offers valuable information on the diagnostic procedures for dementia in daily clinical practice. The differences between PC and SC in diagnostic costs reflect national guidelines. The age effect needs to be studied more.

Dementia diagnosis differs in men and women and depends on age and dementia severity: data from SveDem, the Swedish Dementia Quality Registry.

AIMS: We examine the dementia assessment with focus on age and gender differences. METHODS: Data from the national quality database, Swedish Dementia Registry (SveDem), including 6,937 dementia patients diagnosed during 2007-2009 at memory clinics were used. We have studied the use of investigations for dementia diagnostics such as cognitive tests, blood and cerebrospinal fluid analyses, electroencephalography, radiological examinations and assessments of functions. Severity of cognitive impairment was assessed with the Mini Mental State Examination (MMSE). RESULTS: There was a significant decrease in the number of total tests used in the elderly group (>75 years) when compared with the middle-aged group (65-75 years) and younger patients (<65 years). The oldest group was examined with 4 of 11 possible tests, the middle-aged group had 5/11 tests performed and the youngest age group 6/11 tests. There was also a significant gender difference in the diagnostic workup, however, mostly attributable to age. The number of tests positively correlated with the level of cognition assessed by the MMSE. CONCLUSION: We show here for the first time the impact of age, gender and MMSE score on the dementia diagnostic workup in a large memory clinic patient population in one country.

Changes in Drug Prescribing Practices Are Associated With Improved Outcomes in Patients With Dementia in Sweden: Experience from the Swedish Dementia Registry 2008-2017.

OBJECTIVES: Evidence is lacking on how treatment of comorbidities improves outcomes in patients with dementia. In this study, we evaluated temporal changes in the management of comorbidities in relation to survival rates in incident dementia over a 10-year period in Sweden. DESIGN: Observational cohort study. SETTING AND PARTICIPANTS: A total of 40,219 patients with recently diagnosed dementia in memory clinics from the Swedish Dementia Registry (SveDem) from 2008 to 2017. METHODS: In 1-year blocks, pharmacological treatment of dementia and comorbidities in relationship to risk for fractures, major cardiovascular events (MACE), and death were analyzed using Cox models. Standardized Incidence Ratios (SIR) of death are presented. RESULTS: After standardization for demographics and comorbidities, the risk of fracture, MACE, and mortality decreased by 16%, 23%, and 28%, respectively, between 2008 and 2016. Each year decreased the risk of fracture by 3% (hazard ratio 0.97, 95% confidence interval 0.96-0.99), MACE by 4% (0.96, 0.95-0.97), and death by 5% (0.95, 0.93-0.97). Adjustment for changes in medication use attenuated these associations. Compared with the general population, the risk of death declined by 11%, corresponding to standardized incidence rate ratio, between 2008 and 2016. CONCLUSIONS AND IMPLICATIONS: Over 10 years, a reduction in the short-term risks of fracture, MACE, and death in patients with dementia was associated with changes in drug prescribing practices. These improvements seem to be partly explained by progressive implementation of dementia diagnostic, treatment guidelines, and general management of comorbidities.

SveDem, the Swedish Dementia Registry - a tool for improving the quality of diagnostics, treatment and care of dementia patients in clinical practice.

BACKGROUND: The Swedish Dementia Registry (SveDem) was developed with the aim to improve the quality of diagnostic work-up, treatment and care of patients with dementia disorders in Sweden. METHODS: SveDem is an internet based quality registry where several indicators can be followed over time. It includes information about the diagnostic work-up, medical treatment and community support (www.svedem.se). The patients are diagnosed and followed-up yearly in specialist units, primary care centres or in nursing homes. RESULTS: The database was initiated in May 2007 and covers almost all of Sweden. There were 28 722 patients registered with a mean age of 79.3 years during 2007-2012. Each participating unit obtains continuous online statistics from its own registrations and they can be compared with regional and national data. A report from SveDem is published yearly to inform medical and care professionals as well as political and administrative decision-makers about the current quality of diagnostics, treatment and care of patients with dementia disorders in Sweden. CONCLUSION: SveDem provides knowledge about current dementia care in Sweden and serves as a framework for ensuring the quality of diagnostics, treatment and care across the country. It also reflects changes in quality dementia care over time. Data from SveDem can be used to further develop the national guidelines for dementia and to generate new research hypotheses.