The International Psychogeriatric Association (IPA) published a provisional consensus definition of agitation in cognitive disorders in 2015. As proposed by the original work group, we summarize the use and validation of criteria in order to remove “provisional” from the definition.

This report summarizes information from the academic literature, research resources, clinical guidelines, expert surveys, and patient and family advocates on the experience of use of the IPA definition. The information was reviewed by a working group of topic experts to create a finalized definition.

We present a final definition which closely resembles the provisional definition with modifications to address special circumstances. We also summarize the development of tools for diagnosis and assessment of agitation and propose strategies for dissemination and integration into precision diagnosis and agitation interventions.

The IPA definition of agitation captures a common and important entity that is recognized by many stakeholders. Dissemination of the definition will permit broader detection and can advance research and best practices for care of patients with agitation.

To develop an agitation reduction and prevention algorithm is intended to guide implementation of the definition of agitation developed by the International Psychogeriatric Association (IPA)

Review of literature on treatment guidelines and recommended algorithms; algorithm development through reiterative integration of research information and expert opinion

IPA Agitation Workgroup

IPA panel of international experts on agitation

Integration of available information into a comprehensive algorithm

None

The IPA Agitation Work Group recommends the Investigate, Plan, and Act (IPA) approach to agitation reduction and prevention. A thorough investigation of the behavior is followed by planning and acting with an emphasis on shared decision-making; the success of the plan is evaluated and adjusted as needed. The process is repeated until agitation is reduced to an acceptable level and prevention of recurrence is optimized. Psychosocial interventions are part of every plan and are continued throughout the process. Pharmacologic interventions are organized into panels of choices for nocturnal/circadian agitation; mild-moderate agitation or agitation with prominent mood features; moderate-severe agitation; and severe agitation with threatened harm to the patient or others. Therapeutic alternatives are presented for each panel. The occurrence of agitation in a variety of venues—home, nursing home, emergency department, hospice—and adjustments to the therapeutic approach are presented.

The IPA definition of agitation is operationalized into an agitation management algorithm that emphasizes the integration of psychosocial and pharmacologic interventions, reiterative assessment of response to treatment, adjustment of therapeutic approaches to reflect the clinical situation, and shared decision-making.

To explore and compare the experiences of care home visits during the pandemic in the UK and the Netherlands.

Qualitative semi-structured interview studies

Family carers of relatives residing in care homes in the UK and the Netherlands were interviewed remotely.

Family carers were asked about their experiences of care home visits during the pandemic, and specifically in the Netherlands after care homes had reopened. Transcripts were analyzed in each country separately in the native language using thematic analysis, before discussing findings at multiple analysis meetings.

Across 125 interviews, we developed four themes: (1) different types of contact during lockdown; (2) deterioration of resident health and well-being; (3) emotional distress of both visitors and residents; and (4) compliance to guidelines and regulations. Visiting in both the UK and the Netherlands was beneficial, if possible in the UK, yet was characterized by alternative forms of face-to-face visits which was emotionally distressing for many family carers and residents. In the Netherlands, government guidance did enable early care home visitation, while the UK was lacking any guidance leading to care homes implementing restrictions differently.

Early and clear guidance, as well as communication, is required in future pandemics, and in this ongoing pandemic, to enable care home visits between residents and loved ones. It is important to take learnings from this global pandemic to reimagine long-term care, highlighting the value of socializing for care home residents.

Little is known about the raising number of specialized units for patients with dementia and very severe challenging behavior in the Netherlands. This study describes organizational and treatment characteristics of a sample of these units.

The organizational and treatment characteristics were studied with digital questionnaires completed by the unit managers, interviews with the main physician(s) and observation of the physical environment. The questionnaire consisted of questions about general patient characteristics, unit characteristics and staff characteristics. Furthermore, an interview was held with the main/treating physician often together with another physician or psychologist. The interview guide consisted of questions about admission criteria, the role of staff involved and the treatment process.

Thirteen units participated. Five units were part of a mental health (MH) institution, seven units were part of a nursing home (NH) organization and one unit was a cooperation of MH and NH. Unit sizes ranged from 10 to 28 places. Ten of thirteen units started in 2010 or later. The age of patients admitted was estimated at 75 years. The percentage of involuntary admitted patients was 53% at MH-units and 18% at NH-units. Unit managers mentioned that due to a difference in reimbursement between MH and NH units had difficulty providing the specialized care. Another problem managers faced was recruiting nursing staff. Units strived for expertise in general staffing from both MH and NH. The education level of the nursing staff was comparable between MH and NH. At every unit a physician with background in elderly care medicine or geriatrics and a psychiatrist was involved. Interviewees stressed the role of the nursing staff in the treatment. They were key in providing the care and treatment that, since the main goal of interventions is treatment of and coping with challenging behavior.

The main finding of this study is that units caring for patients with dementia and challenging behavior, despite barriers in regulations and staffing shortage, search for combining expertise from nursing home care and psychiatry in their treatment.

For feeling empowered, a sense of identity, usefulness, control, and self-worth is important for people living with dementia. We developed an empowerment intervention called the SPAN+ program to promote empowerment for nursing home residents with dementia. The aim of this study is to evaluate the feasibility of the SPAN+ program for these residents.

Healthcare professionals of two dementia special care units of one care organization worked with the SPAN+ intervention, which lasted for four months (September 2020 – December 2020). During the intervention, they reflected together on the four themes of empowerment for each resident, and set specific goals. Subsequently, they discussed and adjusted these goals with family caregivers and the person living with dementia (when possible). Furthermore, their personal professional development was targeted by specific exercises around the themes of empowerment.

We used the method of Bowen and colleagues (2009) to evaluate the feasibility of the SPAN+program in terms of acceptability, demand, implementation, practicality, integration, and possible efficacy.

Qualitative data was collected through interviews and a focus group discussion with participating healthcare professionals. Quantitative data was collected through standardized questionnaires filled in by healthcare professionals and family caregivers at baseline and at four- month follow-up.

Preliminary results show that the SPAN+ program supports healthcare professionals to increase attention for empowerment of residents living with dementia, by reflecting together with other healthcare professionals on what matters for each individual resident. Difficulties were reported in engaging family caregivers in the SPAN+ program.

The SPAN+ program seems valuable to increase the focus of healthcare professionals on a sense of identity, usefulness, control, and self-worth of people living with dementia in a nursing home, and to promote their empowerment.

Depression is common among long term care (LTC) residents and has a considerable impact on their quality of life. Therefore, there has been an increased interest in interventions aiming at the reduction of depression among LTC residents. These interventions could be described as formal depression care and include psychosocial interventions (e.g., Creative Arts Interventions), psychotherapeutic interventions (e.g., Life Review) and/or (neuro-)biological interventions (e.g., psychopharmacotherapy). Previous research on the effectiveness of formal depression care suggests that treatments should be more individually tailored. Tailoring treatments, however, is a time- consuming process which may hinder the implementation in LTC. A more integrative approach targeting specific groups of nursing home residents is therefore preferred and may benefit both residents and staff. To do so, insight in moderator effects is needed to better understand and better match treatments to specific groups of LTC residents.

The aim of this study is to provide insight into (1) the effectiveness of interventions, (2) the influence of residents’ characteristics (e.g., residents with cognitive impairment versus residents with physical disabilities) and/or (3) the influence of contextual factors (e.g., group-based versus individual therapy) which may have an impact on the effectiveness of interventions.

Various databases (e.g., EBSCO, PubMed, COHRANE Library) are searched using a predefined search string, combining terms concerning our PICO elements (e.g., “Nursing Home Residents” (P), “Treatment” (I), “Depression” (O)). We only include a) randomized controlled trials investigating the use of formal depression treatments (independent variable), b) among LTC residents and, c) having used a standardized measurement tool for, d) depression (dependent variable). Results of this systematic search will be presented.

Eligible studies will further be screened and assessed for residents’ characteristics and/or contextual factors. A random-effects model will be used to calculate the pooled standardized mean difference (SMD) and to assess the strength of the effects of formal depression treatments on depression. Further subgroup-analysis and meta-regressions will be used to assess the potential moderator effects.

To better match treatments to LTC residents, more insight into the effectiveness, moderator effects and core components of the applied interventions is needed.

Although the concept of empowerment seems useful for good care and support for people living with dementia, there is a lack of understanding as to how to define this concept. Therefore, insight is needed in what empowerment means for people living with dementia.

We performed an integrative literature review (PubMed, CINAHL, PsychINFO), including articles that addressed empowerment for people living with dementia in their title or abstract. Using qualitative data analysis software ATLAS.ti, we applied open codes to describe all relevant aspects of included articles. Common themes and categories were identified using inductive reasoning and constant comparison.

Sixty-nine articles were included. We identified four themes: (1) description of the state of being empowered, (2) the process of empowerment, (3) contribution of the environment to the empowerment process, and (4) effects on other variables. We combined these results with the conceptual framework of our previous qualitative study on the definition of empowerment for people living with dementia based on stakeholders’ perspectives into a revised conceptual framework. Subsequently, the combined information of both studies was visualized in a revised conceptual framework.

This literature review provides more details as to the role of the environment for empowerment of people living with dementia and suggests that empowerment can be considered a dynamic process, taking place through interaction between the person living with dementia and their environment. Our revised conceptual framework of empowerment can serve as a basis for future studies on empowerment for people living with dementia, and to support (in)formal caregivers in the empowerment process.

Although formal treatments like antidepressants and psychotherapy may effectively reduce depression in nursing home residents, side effects and poor treatment adherence are common. To improve depression care, it is important to also learn from informal strategies already used successfully in daily practice, alongside or in absence of formal treatment. For example, although not prescribed as formal treatment, a care provider may seat a resident with depression at a table near the window. This may have antidepressant effects due to extra day light or pleasant views from the window.

To identify, categorize, and prioritize informal antidepressant strategies for residents already used in daily practice as reported by residents themselves, their relatives, and professional caregivers.

In the first Group Concept Mapping study, residents, relatives, and professional caregivers (N = 124) brainstormed on strategies to prevent or improve depression that may be performed by residents themselves. In the second study, the same participants (N = 110) reported on strategies others involved in residents’ lives could perform. In a second round of both studies, participants rated the expected effectiveness (N = 54, N = 51 respectively) and feasibility (N = 50 for both studies) of the strategies mentioned. In addition, strategies for both studies were sorted based on similarity in meaning by experts.

Six clusters appeared for actions to be undertaken by residents themselves, and five clusters for actions by others. The results showed that, for strategies by residents, the clusters ‘Being socially connected’ and ‘Participating in activities’, and for strategies by others, the cluster ‘Offering personal attention’ stand out the most in terms of high expected effectiveness. The cluster with strategies executed by residents that stood out as the most feasible was ‘Having a healthy living environment’. The most feasible clusters performed by others were ‘Offering personal attention’, ‘Using positive treatment/approach’, and ‘Using or adapting the physical environment’.

By using an innovative bottom-up participatory approach, this research shed light on various clusters of useful informal antidepressant strategies for daily practice. To test effectiveness and implementation, research is needed on these antidepressant strategies and their regular use in care.

Depression is common among nursing home residents and has a considerable impact on their quality of life. Therefore, there has been an increased interest in interventions aiming at the reduction of depression among nursing home residents. These interventions could be categorized into formal and informal depression care. Formal care includes psychosocial, psychotherapeutic and/or (neuro-)biological interventions. Informal care can be provided by nursing home staff, alongside the formal care (e.g., letting sunlight into the room when one believes in the positive effects of daylight). Although many studies have been done about depression treatment in nursing homes, there is still a lack of insight into the effectiveness of interventions and how they differ among specific target groups (e.g., residents with cognitive impairment versus residents with physical disabilities). Moreover, research into informal care is rather rare. More insight is needed into the effect of formal and informal depression care and the mutually reinforcing effects of those strategies on nursing home residents. This insight is essential to better match treatments with residents and to provide a more comprehensive approach to counter depression.

The aim of this study is to gain insight in the use of formal and informal depression care and their associations with depression among nursing home residents.

A six month cohort study will be conducted.

Residents will be recruited in nursing homes across the Netherlands and Flanders (Belgium). To measure formal and informal care, newly developed tools will be cross-culturally validated: one to assess the provided formal care in nursing homes, two tools for measuring the used informal strategies. Depression outcomes will be measured with the Geriatric Depression Scale, Cornell Scale for Depression in Dementia, and the Nijmegen-Observer-Rated Depression-scale). Baseline measurements and cross- sectional analyses will be performed and repeated after six months. The intended associations will be assessed using multiple regression analysis.

To develop a good depression care policy, a more comprehensive approach is needed and may benefit both residents and staff.

Long term care organisations in the Netherlands organize day time activities for people with dementia who receive care at home to prevent burden of informal caregivers. Clients with dementia that are characterised as highly educated and/or highly intelligent often refuse to participate in such activities. Boredom, a lack of association with and unwillingness to mix with other participants are often reported. In 2006, the spiritual counselling department of long term care organisation Respect, The Hague, started with Studiegroepen (pronounced ‘studee-groo-pen’, study groups). This initiative provides adjusted leisure activities and group conversations about present-day topics and shared life experiences.

Existential philosophical themes form the basis for discussions. Although Studiegroepen seems very successful and there are long waiting lists, the program is barely studied and is unknown in other organisations.

(1) to explore the opinions of the participants, their informal caregivers (mainly partners), and spiritual counsellors about Studiegroepen and the way the program meets the participants needs for autonomy, competence and relatedness (Self Determination Theory); (2) for the development of implementation material for other organisations, the aim was to reveal specific components of the program and to explore their barriers and facilitators.

A thematic analysis in Atlas.ti of semi-structured interviews with 15 clients, eight informal caregivers and four spiritual counsellors revealed extremely positive evaluations. There were strong indications that the program meets clients’ needs for autonomy, competence and relatedness. A striking example of a positive evaluation was a cancellation of relocation of a client-partner couple due to the lack of Studiegroepen in that city. Results suggest positive effects on mood, and quality of life. Several informal caregivers perceived a delay in dementia progression. The research revealed specific program components and barriers and facilitators to implement them.

Studiegroepen is a very positively evaluated initiative for highly educated and/or highly intelligent long time care clients with dementia living at home. This initiative should be systematically studied and described, while implementation material needs to be developed. This may help to introduce the program in other organisations and to further explore effects on outcomes in participants, and in informal caregivers.

Over half of the households in The Netherlands have one or more pets. In elderly people, owning a pet is associated with a better quality of life and less loneliness, anxiety, depression and agitation. Many non-residential long term care (LTC) clients rely on support of others to take care of their pets. However, that may place a significant burden on the social support network of the LTC client. Issues relevant to keeping pets are not explicitly incorporated in the Dutch Long-term Care Act. Many LTC organizations have no instruments for care workers, clients and their family (1) to consolidate the positive role of pets for clients’ quality of life and (2) to address whether it is possible to keep the pets and to organize care accordingly.

To help care workers, clients and their family to gain insight into the role of the pets in the clients’ life and their social support network; to develop practical instruments that help making decisions about owning and caring for pets.

PLAN: In months 0-16, a narrative systematic review will be conducted (STUDY 1.1) on the meaning of pets for elderly people in general. A qualitative STUDY 1.2 with LTC clients, their informal carers and care professionals will validate and further explore the topic. STUDY 1.3 and 1.4 develop and (cognitively) validate work cards for interviews of clients and relatives by care providers. In months 17-29, an Experience based co-design method (STUDIES 2.1-2.3) will be used to develop the PET@home toolkit. The method includes (1) discovery interviews (10 clients and their family), (2) focus groups with healthcare providers (N = 2x6); (3) focus groups with 6-8 clients and informal and professional carers. In STUDY 3.1, potential users will pre-test the Toolkit. In months 30-34, a process evaluation (STUDY 3.2) is performed in 10-15 clients. A dissemination and an implementation plan will be developed.

The project will result in an innovative PET@home toolkit that will help to assess the pets role in the clients’ quality of life and support network, and will help making decisions about owning and caring for pets.

On May 11, the Dutch Government allowed 26 nursing homes to welcome 1 visitor per resident, after 2 months of lockdown. The study aimed to monitor in-depth the feasibility of the regulations and their impact on the well-being of residents, their visitors, and healthcare staff.

Mixed-methods study in 5 of the 26 facilities; the facilities were affiliated to an academic network of nursing homes.

Visitors and healthcare professionals.

Allowing visitors using local regulations based on national guidelines.

Digital questionnaire, analyzing documentation such as infection prevention control protocols, attending meetings of COVID-19 crisis teams, in-depth telephone or in-person interviews with visitors and healthcare professionals, and on-site observations.

National guidelines were translated with great variety into local care practice. Healthcare professionals agreed that reopening would increase the well-being of the residents and their loved ones. However, there were also great worries for increasing workload, increasing the risk of emotional exhaustion, and the risk of COVID-19 infections. Compliance with local regulations was generally satisfactory, but maintaining social distance and correctly wearing face masks appeared to be difficult. Care staff remained ambivalent for fear of infections. In general, allowing visitors was experienced as having a positive impact on the well-being of all stakeholders. Nevertheless, some residents with dementia showed negative effects.

The complete lockdown of Dutch nursing homes had a substantial impact on the well-being of the residents. The reopening was welcomed by all stakeholders, but provided a high organizational workload as well as feelings of ambivalence among care staff. In the second wave, a more tailored approach is being implemented. However, facilities are sometimes still struggling to find the right balance between infection control and well-being.

Extreme neuropsychiatric symptoms (NPS) can be a heavy burden for nursing home (NH)-residents, relatives and caregivers. When conventional treatments are ineffective or have intolerable side effects, extreme NPS can be considered refractory. In these situations, continuous palliative sedation (CPS) is sometimes administered. We explored the trajectory leading to CPS and its application in NH-residents with dementia and refractory NPS.

A qualitative interview study was performed in 2017. Relatives, elderly care physicians and other staff members involved with three NH-residents with dementia and extreme refractory NPS who received CPS were interviewed. These NH-residents lived on dementia special care units of three NHs in the Netherlands. We used consecutive sampling to select participants. Medical files were studied. Semi-structured interviews were conducted. Transcriptions were analyzed with thematic analysis, including directed content analysis.

Nine in-depth interviews with fourteen participants were held. Analysis resulted in five main themes with several subthemes reflecting phases of the trajectory leading to CPS and the CPS application itself, a sixth main theme concerned evaluations thereof. According to the first theme (run-up), the suffering of the NH-resident was described as unbearable/an inner struggle. Participants still had hope for improvement. Concerning the second theme (turning point), hope was lost, participants were convinced they had tried everything and experienced feelings of powerlessness and failure. Regarding theme three (considering CPS), intermittent sedation was applied in all three cases and peer consultation was employed. Honoring the wish of the NH-resident and therapeutic uncertainties, among others, were important subthemes. According to theme four (decision to start CPS), in each case one specific aspect was a decisive trigger for administering CPS. Concerning theme five (applying CPS) feelings of relief were experienced after starting with CPS.

The trajectory leading up to CPS in NH-residents with dementia and extreme refractory NPS was complex and burdensome, but the application led to relief and contentment of all those involved. We recommend to include external consultation in the decision process and to apply intermittent sedation as a preceding step when CPS is considered.

Psychotropic drugs are frequently and sometimes inappropriately used for the treatment of neuropsychiatric symptoms of people with dementia, despite their limited efficacy and side effects. Interventions to address neuropsychiatric symptoms and psychotropic drug use are multifactorial and often multidisciplinary. Suboptimal implementation of these complex interventions often limits their effectiveness. This systematic review provides an overview of barriers and facilitators influencing the implementation of complex interventions targeting neuropsychiatric symptoms and psychotropic drug use in long-term care.

To identify relevant studies, the following electronic databases were searched between 28 May and 4 June: PubMed, Web of Science, PsycINFO, Cochrane, and CINAHL. Two reviewers systematically reviewed the literature, and the quality of the included studies was assessed using the Critical Appraisal Skills Programme qualitative checklist. The frequency of barriers and facilitators was addressed, followed by deductive thematic analysis describing their positive of negative influence. The Consolidated Framework for Implementation Research guided data synthesis.

Fifteen studies were included, using mostly a combination of intervention types and care programs, as well as different implementation strategies. Key factors to successful implementation included strong leadership and support of champions. Also, communication and coordination between disciplines, management support, sufficient resources, and culture (e.g. openness to change) influenced implementation positively. Barriers related mostly to unstable organizations, such as renovations to facility, changes toward self-directed teams, high staff turnover, and perceived work and time pressures.

Implementation is complex and needs to be tailored to the specific needs and characteristics of the organization in question. Champions should be carefully chosen, and the application of learned actions and knowledge into practice is expected to further improve implementation.

The Act in case of Depression program showed effects on the quality of life and depression in nursing home (NH) residents. We aimed to explore the effects of this complex multidisciplinary program on job satisfaction, job demands, and autonomy in nursing home staff.

Four data points from a stepped-wedge cluster-randomized trial on patient outcomes were used for secondary analyses on staff outcomes.

Sixteen dementia special care and 17 somatic care units in Dutch NHs.

Participants were 717 (90.1%) care staff or trainees, 34 (4.3%) paramedical staff, and 45 (5.7%) other staff members.

Intervention describes procedures for nursing staff, activity therapists, psychologists, and physicians. It contains evidence-based pathways for depression assessment, treatment, and monitoring treatment results.

Mixed models for intention-to-treat analyses showed no significant changes in job demands, job satisfaction, or autonomy. Models corrected for the ratio of unit residents who received, when indicated, a specific program component revealed reduced job demands and improved job satisfaction and autonomy when treatment procedures were used. A better use of assessment procedures was associated with increased job demands, while conducting monitoring procedures was associated with increased job demands and decreased autonomy.

Components of complex care programs may affect the staff outcomes in opposite directions and, taken together, produce a zero-sum or a statistically insignificant effect. While implementing treatment protocols affecting patients directly can also improve job outcomes such as satisfaction and autonomy and decrease job demands, it is possible that other procedures of complex programs may have unfavorable effects on job outcomes. It is important to account for specific components of complex interventions when evaluating intervention effects.