In constant search of the good: a qualitative study into insiders' perspectives on living well with dementia.

Introduction: The new concept of 'living well with dementia' is currently gaining traction in practice, policy, and research. However, people with dementia and their carers' own understanding of this concept has not received much scholarly attention. This is because empirical studies into living well with dementia are predominantly quantitative; there are only a few qualitative studies on this topic. This study therefore sets out to investigate what living well means for 'insiders' in an everyday context. Methods: To explore insiders' own perspectives on living well with dementia, we conducted interviews and focus group discussions with 21 dementia stakeholders. The study included ten individuals with mild-to-moderate dementia living at home, five family carers who are or have been involved in the care for a person with dementia, and six health and social care professionals. Results: Living well with dementia, for our study participants, revolves around shaping their daily lives according to their values. In this sense, living well with dementia is no different than without. As it involves the values of the person with dementia and those of their social network, living well is both an individual and a collective concern. Having dementia undermines people with dementia's ability to substantiate their values, but it is still possible to live well. As they attempt to shape living well with dementia, respondents encounter tensions within the social network and within the person with dementia. To handle these tensions, they work for mutual attunement by using sensitivity and switching between leading and following in social interactions. Discussion: Living well with dementia in a daily context is a dynamic process in which people with dementia, family carers, and professionals constantly seek the good together. This insight contributes to a better understanding of stakeholders' ongoing, invisible efforts to mutually attune. It may also help bypass dichotomizing approaches to dementia. Finally, it opens up new venues for research into reciprocity in the care collective. The article closes with recommendations to improve dementia care and support in light of these findings.

Supporting Resilience of Older Adults with Cognitive Decline Requires a Multi-Level System Approach.

The concept of resilience, i.e., the capacity of a system to bounce back after a stressor, is gaining interest across many fields of science, policy, and practice. To date, resilience research in people with cognitive decline has predominantly addressed the early stages of decline. We propose that: (1) resilience is a relevant concept in all stages of cognitive decline; and (2) a socio-ecological, multisystem perspective on resilience is required to advance understanding of, and care and support for people with cognitive decline and their support networks. We substantiate our position with literature and examples. Resilience helps understand differences in response to risk factors of (further) cognitive decline and informs personalised prevention. In a curative context, interventions to strengthen resilience aim to boost recovery from cognitive decline. In care for people with dementia, resilience-focused interventions can strengthen coping mechanisms to maintain functioning and well-being of the individual and their support network. A good example of improving resilience in the social and policy context is the introduction of age-friendly cities and dementia-friendly communities. Good care for people with cognitive decline requires a health and social care system that can adapt to changes in demand. Given the interdependency of resilience at micro-, meso- and macro-levels, an integrative socio-ecological perspective is required. Applying the concept of resilience in the field of cognitive decline opens new horizons for research to improve understanding, predicting, intervening on health and social care needs for the increasing population with cognitive decline.

Hospital Care for Frail Elderly Adults: From Specialized Geriatric Units to Hospital-Wide Interventions.

Much of the acute care provided in hospitals is for elderly people. Frailty is a common clinical condition among these patients. Frail patients are vulnerable to undergoing adverse events, to developing geriatric syndromes and to experiencing functional decline during or due to hospitalization. The strategy for providing specialized geriatric care to these hospitalized frail elderly patients currently consists of care provision either by specialized departments or by specialized teams who adopt comprehensive geriatric assessment. Even so, financial and human resources are insufficient to meet the needs of all hospitalized frail elderly patients who require comprehensive geriatric assessment. New innovative and more efficient geriatric interventions, in which the priorities of the patients themselves should be the main focus, should be developed and implemented, and professionals in all specialties should be educated in applying the fundamentals of geriatric medicine to their frail elderly patients. In the evaluation of such interventions, patient-reported outcomes should play a major role, in addition to the more traditional outcome measures of effectiveness, quality of care and cost-effectiveness.

Development and validation of the Geriatric In-hospital Nursing Care Questionnaire.

OBJECTIVES: To develop a questionnaire, the Geriatric In-hospital Nursing Care Questionnaire (GerINCQ), to measure, in an integrated way, the care that older adults receive in the hospital and nurses' attitudes toward and perceptions about caring for older adults. DESIGN: Questionnaire development. SETTING: Twelve university and teaching hospitals. PARTICIPANTS: Thirteen experienced geriatric nurses and three geriatricians from 12 hospitals evaluated an initial version of the questionnaire. Two hundred seventy-one nurses, primarily registered nurses from 11 geriatric, medical, and surgical departments in six hospitals, validated the final questionnaire. MEASUREMENTS: Items from two published instruments were extracted for use in the questionnaire. Content validity was confirmed using the Delphi technique with an expert panel. Internal consistency was measured by calculating Cronbach alpha; intrarater reliability was measured using test-retest correlations and intraclass correlation coefficients (ICCs); differences between hospital departments were analyzed using analysis of variance. Sensitivity to detect before-and-after changes with implementation of a geriatric care program was determined using the Student t-test. RESULTS: Consensus was reached after three Delphi rounds. The GerINCQ is a self-administered questionnaire to be filled out by hospital nurses that comprises five subscales with 67 items. It has good content validity (each item content validity index >0.9) and good internal consistency (Cronbach alpha = 0.86). Intrarater reliability revealed high test-retest results (ICC = 0.87). The questionnaire detected significant differences between nurses in three types of hospital departments (medical, surgical, and geriatric (P < .01). The GerINCQ was sensitive to changes after an educational program (P < .02) and had a large effect size (0.5). CONCLUSION: The GerINCQ is a reliable and valid tool and is sensitive to change over time. It is clinically relevant because it provides a quantitative measure of hospital nurses' geriatric practices, attitudes, and perceptions. Moreover, the GerINCQ is suitable for monitoring progress after implementation of geriatric improvement programs.

Uniform presentation of process evaluation results facilitates the evaluation of complex interventions: development of a graph.

RATIONALE, AIMS AND OBJECTIVES: Process evaluation is a highly essential element for the increasing number of studies regarding multi-component interventions. Yet, researchers are challenged to collect and present appropriate process outcomes in such way that it is easy and valuable to be used by other researchers and policy makers in interpreting and comparing intervention effects because of the absence of standards for conducting and publishing process evaluation. This article describes the development of a method to concisely summarize the results of process evaluations of complex multi-component interventions. METHODS: Development of a graph with the aim to facilitate the reporting of process evaluation's results, based on a narrative review of the literature for process measures used in complex interventions for elderly people. RESULTS: Seventeen articles of process evaluations alongside effect studies of complex interventions were reviewed. From these articles, it was found that process evaluations should address whether the intervention (1) was implemented successfully; (2) was evaluated properly; and (3) can be continued in the future. A flow chart based on the essential components of an adequate process evaluation was developed. A simplified but highly informative figure reporting a summary of the results of the process evaluation is proposed and its use is explained by administering the figure to two studies including a process and effect evaluation of a complex intervention. CONCLUSION: A graphical approach - which includes the core results of process evaluation and can be used directly in reporting effectiveness studies - will help researchers and policy makers to interpret and compare effects of complex multi-component interventions.

The CareWell in Hospital program to improve the quality of care for frail elderly inpatients: results of a before-after study with focus on surgical patients.

BACKGROUND: The objective of this study was to evaluate implementation of an innovative intervention designed to prevent complications and stimulate early rehabilitation among frail elderly inpatients. METHODS: The program was implemented in April 2011. A mixed-methods process evaluation and before-after study were performed. Primary effect outcomes included incidence of hospital-acquired delirium, cognitive decline, and decline in activities of daily living (ADL) during hospital stay. Secondary endpoints included ADL performance 3 months postdischarge, readmission, and caregiver burden. RESULTS: One hundred ninety-one preintervention and 195 postintervention patients aged 70 years or older were included. Overall, no significant differences in primary endpoints were found. Mean ADL between discharge and follow-up improved (3.2 vs 5.7, P = .058). Caregivers rated burden of care lower at 3 months postdischarge (.5 vs -.6, P = .049). CONCLUSIONS: The CareWell in Hospital program was implemented satisfactorily. Although the low baseline delirium incidence (11%), higher comorbidity, and an increasing learning curve during a restricted implementation period potentially influenced the overall effects, this integrated care program may have beneficial effects on outcomes among frail elderly surgical patients.

The CareWell in Hospital questionnaire: a measure of frail elderly inpatient experiences with individualized and integrated hospital care.

Given our aging society with an increasing number of frail elderly patients, we must provide integrated care tailored to their complex needs regarding health and well-being. The aim of this study was to develop and validate a questionnaire designed to assess how frail hospitalized elderly patients experience several important aspects of individualized and integrated care. An 8-item questionnaire was developed using input from a panel representing the target group and administered to patients age ≥70 years from surgical, medical, and geriatric departments to measure data characteristics, internal consistency, test-retest reliability, construct validity, and responsiveness. A total of 470 questionnaires were returned, including 78 for test-retest reliability. Data were missing from 1.7% to 7.0% within the individual questions. The percentage of questions answered with "don't know" ranged 3.8% to 21.9%. Cronbach's α for internal consistency was 0.70. Test-retest intraclass correlation was 0.75. Achievement of goals during the hospital stay was significantly correlated with the questionnaire score. Scores did not differ significantly between departments or between the before and after measurements related to an innovative intervention study in healthcare delivery. The CareWell in Hospital questionnaire has good content validity, internal consistency, and test-retest reliability and warrants further research to explore responsiveness.

Effects of hospital-wide interventions to improve care for frail older inpatients: a systematic review.

BACKGROUND: Although it is widely recognised that frail older persons need adaptation of healthcare services, it is unclear how hospital care in general can best be tailored to their frailty. OBJECTIVE: To systematically review the evidence for hospital-wide interventions for older patients. METHODS: PubMed, Cochrane CENTRAL, Cinahl and reference lists of included articles (1980-2009) were searched. Papers describing (1) randomised controlled trials, controlled clinical trials, controlled before-after studies or interrupted time series, (2) patients ≥ 65 years admitted to hospital, (3) hospital-wide organisational interventions, and (4) patient-related outcomes, quality of care, patient safety, resource use or costs were included. Two reviewers extracted data and assessed risk of bias independently, according to Cochrane Effective Practice and Organization of Care Review Group guidelines. RESULTS: The authors included 20 articles out of 1175. The mean age of the study populations ranged from 74.2 to 85.8 years. Interventions included multidisciplinary (consultative) teams, nursing care models, structural changes in physical environment and/or changes in site of service delivery. Small or no effects were found on patient-related outcomes such as functional performance, length of stay, discharge destination, resource use and costs compared with usual care. Methodological quality evaluation showed data incompleteness and contamination as main sources of bias. CONCLUSIONS: No single best hospital-wide intervention could be identified using strict methodological criteria. However, several interventions had positive results, and may be used in hospital practice. Since strict methodological designs are not optimal for evaluating highly complex interventions and settings, the authors recommend studying hospital-wide interventions for older persons using adapted quality and research criteria.