The development and feasibility evaluation of a program to identify and manage apathy in people with dementia: the SABA program.

OBJECTIVES: To develop and evaluate feasibility of a program for family and professional caregivers to identify and manage apathy in people with dementia: the Shared Action for Breaking through Apathy program (SABA). METHODS: A theory- and practice-based intervention was developed and tested among ten persons with apathy and dementia in two Dutch nursing homes from 2019 to 2021. Feasibility was evaluated with interviews with family caregivers (n = 7) and professional caregivers (n = 4) and two multidisciplinary focus groups with professional caregivers (n = 5 and n = 6). RESULTS: SABA was found feasible for identifying and managing apathy. Caregivers mentioned increased knowledge and awareness regarding recognizing apathy and its impact on their relationship with the person with apathy. They experienced increased skills to manage apathy, a greater focus on small-scale activities and increased appreciation of small moments of success. The content, form and accessibility of the program's materials were considered facilitating by all stakeholders, as was the compatibility of the procedures with the usual way of working. The expertise and involvement of stakeholders, staff stability and the support of an ambassador and/or manager were facilitating, while insufficient collaboration was a barrier. Organizational and external aspects like not prioritizing apathy, staff discontinuity, and the Covid-19 pandemic were perceived as barriers. A stimulating physical environment with small-scale living rooms, and access to supplies for activities were considered facilitating. CONCLUSIONS: SABA empowers family and professional caregivers to successfully identify and manage apathy. For implementation, it is important to take into account the facilitators and barriers resulting from our study.

Identifying and managing apathy in people with dementia living in nursing homes: a qualitative study.

BACKGROUND: Although apathy is common in people with dementia and has profound negative effects, it is rarely diagnosed nor specifically treated in nursing homes. The aim of this study is to explore experiences in identifying and managing apathy from the perspectives of people with dementia and apathy (PwA), family caregivers (FCs) and professional caregivers (PCs). METHODS: Descriptive qualitative study with purposive sampling, comprising eleven semi-structured in-depth interviews with PwA, FCs or PCs and focus groups with twelve PCs in Dutch nursing homes. Seventeen additional in-depth interviews with caregivers were held, after signals of increasing apathy during the first Covid-19 lockdown. Using an inductive approach, data was analysed thematically to explore the experiences in identifying and managing apathy from the perspective of different stakeholders. RESULTS: Three themes were identified: 1) the challenge to appraise signals, 2) the perceived impact on well-being, 3) applied strategies to manage apathy. Although participants described apathy in line with diagnostic criteria, they were unfamiliar with the term apathy and had difficulties in appraising signals of apathy. Also, the perceived impact of apathy varied per stakeholder. PwA had difficulties reflecting on their internal state. FCs and PCs experienced apathy as challenging when it reduced the well-being of PwA or when they themselves experienced ambiguity, frustration, insecurity, disappointment or turning away. Dealing with apathy required applying specific strategies that included stimulating meaningful contact, adjusting one's expectations, and appreciating little successes. CONCLUSIONS: When addressing apathy in nursing homes, it is important to consider that a) all stakeholders experience that appraising signals of apathy is challenging; b) apathy negatively influences the well-being of people with dementia and especially their FCs and PCs; and c) FCs and PCs can successfully, albeit temporarily, manage apathy by using specific strategies.

Challenging behavior of nursing home residents during COVID-19 measures in the Netherlands.

OBJECTIVES: From the perspective of the nursing home (NH) practitioners, to gain understanding of (1) whether challenging behavior in NH residents changed during the COVID-19 measures, (2) whether the practitioners' involvement in the treatment of challenging behavior changed, (3) what can be learned from the experience of NH staff. METHODS: A mixed methods study with a survey in 323 NH practitioners (psychologists, elderly care physicians, nurse practitioners) in the Netherlands, and in-depth interviews in 16 NH practitioners. Nonparametric analyses were used to compare estimated proportions of residents with increased and with decreased challenging behavior. Content analyses were conducted for open-ended questions and in-depth interviews. RESULTS: Participants reported changes in challenging behavior with slightly higher proportions for increased (Q1/Mdn/Q3: 12.5%, 21.7%, 30.8%) than for decreased (8.7%, 14.8%, 27.8%, Z = -2.35, p = .019) challenging behavior. Half of the participants reported that their work load increased and work satisfaction worsened during the measures. Different strategies were described to respond to the effects of COVID-19 measures, such as video calls, providing special areas for residents to meet their loved ones, adjusting activities, and reducing the exposure to negative news. CONCLUSIONS: Because COVID-19 measures resulted in both increased and decreased challenging behavior in NH residents, it is important to monitor for their potential long lasting effects. Increased work load and worsened work satisfaction of the NH staff, together with the changes in type of challenging behavior, indicate that the harmful effects of the anti-pandemic measures should be taken seriously.

Parkinson's disease: patient and general practitioner perspectives on the role of primary care.

Background: Specialized Parkinson's disease (PD) care offers advantages to patients. However, specialized health care providers may be unaware of patients' personal context and comorbidity, leading to conflicting treatment regimens. Patients may benefit from a more holistic approach. Objective: To clarify the role community-dwelling PD patients see for general practitioners (GPs) in PD care and to clarify the role GPs see for themselves. Methods: Qualitative interview study with 16 community-dwelling PD patients and 12 GPs in the Netherlands, using a constant comparative approach to analysis. Results: Patients expressed a preference for self-management and autonomy in decision-making. GPs chose a limited, reactive position in early-stage PD care to stimulate patient autonomy. Moreover, GPs felt insufficiently competent to extend their role. Patients also felt GPs lack expert knowledge and skills; they focus on their neurologist for PD care. In addition, GPs observed patients might not realize what accessory role the GP could have, a role GPs described as essential in being aware of patient's well-being. Patients did not describe additional roles for the GP in more advanced disease, whereas GPs mentioned a shift towards a more proactive and extended role. Conclusion: Patients and GPs see a limited role for the GP in early-stage PD care because of patient autonomy and GP's lack of specific knowledge and skills. However, GPs should feel more confident of the added value of their generalist approach to care for patients with a complex chronic disorder as PD. If generalist and specialized care reinforce each other, PD patients benefit.

The diagnostic pathway of Parkinson's disease: a cross-sectional survey study of factors influencing patient dissatisfaction.

BACKGROUND: The diagnostic pathway of Parkinson's disease (PD) is often complicated. Experiences during this pathway can affect patients' satisfaction and their confidence and trust in healthcare providers. Although healthcare providers cannot influence the impact of the diagnosis, they can influence how patients experience the pathway. This study, therefore, aims to provide insight into PD patients' dissatisfaction with the diagnostic pathway and to describe the factors that influence it. METHODS: We carried out a cross-sectional survey study among 902 patient members of the Dutch Parkinson's Disease Association, who were each asked to write an essay about their diagnostic pathway. A coding format was developed to examine the content of these essays. Inter-observer agreement on coding patient dissatisfaction was calculated using Cohen's kappa. The χ2 test and a multivariable logistic regression analysis were performed to assess the relation between dissatisfaction and sex, level of education, duration of the pathway, communication with the general practitioner (GP) and the neurologist, the number of healthcare providers involved, whether or not a second opinion had taken place (including the person who initiated it) and diagnostic delay (taking into consideration who caused the delay according to the patient). A subgroup analysis was performed to gain insight into sex-related differences. RESULTS: Of all patients, 16.4% explicitly described they were dissatisfied with the diagnostic pathway, whereas 4.8% were very satisfied. The inter-observer agreement on coding dissatisfaction was κ = 0.82. The chance of dissatisfaction increased with a lower level of education, the involvement of more than one additional healthcare provider, a second opinion initiated by the patient and delay caused by a healthcare provider. When only the GP and the neurologist were involved, women were more likely to be dissatisfied than men. CONCLUSIONS: PD patients' dissatisfaction with the diagnostic pathway is related to a lower level of education, a second opinion initiated by the patient and experienced diagnostic delay. GPs can positively influence patients' experiences if they are aware of these risk factors for dissatisfaction and pay extra attention to communication and shared decision making. This will contribute to a trusting therapeutic relationship that is indispensable with progression of the disease.

Prodromal symptoms and early detection of Parkinson's disease in general practice: a nested case-control study.

BACKGROUND: Timely diagnosis of Parkinson's disease (PD), facilitating early intervention, depends largely on the GP's awareness of early symptomatology. For general practice, it is unknown which prodromal symptoms (symptoms preceding the typical motor symptoms of PD) demand the GP's alertness. OBJECTIVE: To assess prodromal symptoms that should alert the GP to the possibility of PD in primary care patients. METHODS: A nested case-control study was carried out in a population of approximately 12000 patients registered in the Continuous Morbidity Registration database affiliated with the University of Nijmegen in the Netherlands. The database pools subject data from four primary care practices. The subjects comprised all 86 patients diagnosed with PD between 1972 and 2007, and 78 controls, matched by sex, age, socioeconomic status and primary care practice. The primary measures of outcome were the prodromal symptoms presenting in the two years prior to the diagnosis of PD. The number (and type) of referrals and diagnostic tests were also assessed. RESULTS: In the two-year period prior to diagnosis, PD patients more often presented with functional somatic symptoms, constipation, hyperhidrosis and sleep disorders than controls. Patients also more frequently experienced more than one prodromal symptom and were more often referred within the primary care team or to a medical specialist. CONCLUSIONS: Prodromal symptoms of PD are encountered in general practice. GPs should be alert when patients present with multiple prodromal symptoms in a two-year period, especially considering the benefits of early intervention, and the future possibilities for disease-modifying therapy.

Being in control of Parkinson's disease: A qualitative study of community-dwelling patients' coping with changes in care.

BACKGROUND: Chronically ill patients have to cope with transfers in the level or setting of care. Patients with prevalent disorders such as diabetes mellitus can be supported by their general practitioner (GP) when experiencing such care changes, as the GP already offers them disease-specific care. For community-dwelling patients with low-prevalent diseases such as Parkinson's disease (PD) - for which disease-specific care is provided by medical specialists - tailoring support to handle care changes requires more insight into patients' coping. OBJECTIVES: To explore PD patients' coping with care changes. METHODS: A qualitative interview study was performed in 2013-2015 with a purposive sample of 16 community-dwelling PD patients in the Netherlands. A research assistant visited patients every month to explore if they had experienced a care change. If so, patients were interviewed face-to-face. An inductive approach to comparative content analysis was used. RESULTS: Patients encountered a variety of care changes such as changes in the level of unpaid care, the purchase of tools, modification of pharmacotherapy or admission to hospital. Being able to anticipate, initiate and independently handle care changes contributes to patients' sense of control and acceptance of the post-change situation. Patients, who commenced care changes themselves, had more realistic expectations of it. CONCLUSION: Community-dwelling PD patients seem to be able to cope with the care changes they face. Offering education to facilitate their anticipation and initiation of changes in care and their ability to act independently, can contribute to patients' wellbeing. GPs can play a role in this.

Transitions in Parkinson's disease in primary care: protocol of a longitudinal mixed methods study.

INTRODUCTION: Parkinson's disease affects many aspects of the lives of patients and their relatives. Patients must adapt continuously to disabilities that necessitate changes in (medical) support, such as domestic adjustments, involvement of (non)professional caregivers or admission to hospital. Such changes mark a transition: a transfer of a patient between levels or locations of care. Transitions are likely to be multifold and complex, given that Parkinson's disease care extends across all echelons of healthcare. Patients and relatives are vulnerable during a transition, which imposes risks for their safety and quality of life. Guidance by the general practitioner, who knows the preferences of the patient, can help to overcome challenges associated with a transition. However, patient-centred primary care requires insight into the transitions patients with Parkinson's disease encounter. We aim to examine these transitions and the way patients, relatives and general practitioners experience them and cope with them. Moreover, we will study the patients' expectations of their general practitioner during a transition and the general practitioners' views on their role. METHODS AND ANALYSIS: A longitudinal mixed methods study will be conducted, using qualitative research methods combined with quantitative data as a validated questionnaire on quality of life. Patients will be asked to make a video diary every 2 weeks for a period of 1 year. Once they encounter a transition, patients and their general practitioners will be interviewed to identify causes and consequences of the transition. The verbatim transcripts of the videos and interviews will be analysed according to the principles of constant comparative analysis. ETHICS AND DISSEMINATION: Ethical approval was not needed according to Dutch legislation. Informed consent of patients, relatives and general practitioners will be obtained. We will disseminate the results in peer-reviewed journals, at research conferences and on the website of the Dutch Parkinson's Disease Association.

Time intervals in diagnosing Parkinson's disease: The patients' views.

OBJECTIVE: To explore patients' views on their pathway to the diagnosis of Parkinson's disease (PD). METHODS: A qualitative study of 52 essays written by patients with PD, using comparative content analysis. RESULTS: Patients divide their diagnostic pathway into three time intervals: recognition of the symptoms; the decision to seek help; and the process of diagnosing PD. Patients have difficulties recognizing the prodromal symptoms of PD (their knowledge is based on public figures with advanced PD) and mention their general practitioners do as well. The decision to seek help is influenced by the patient's attitude toward health care and by their significant others. More than half of the patients believe their diagnosis was delayed. However, the majority of all patients are satisfied with their diagnostic trajectory. CONCLUSION: The pathway to diagnosing PD is an iterative process influenced by patient-, health care provider- and disease-related factors. Despite possible delay in diagnosis, patients are content with their pathway. PRACTICE IMPLICATIONS: In order to facilitate earlier diagnosis and timely therapeutic intervention (in particular with regard to future possibilities for disease modifying therapy), effort is required to increase the recognition of prodromal symptoms of PD by patients, their significant others and health care providers.