Dementia In Ireland Research Articles

Cultivating A Culture Of Continuous Improvement And Teamwork In An ICPOP Hub

Abstract Background The Integrated Care for Older Person’s (ICPOP) Hub is one 3 Hubs in the healthcare region. The success of the ICPOP Hub has been the adaptability, motivation, dedication of the multi-disciplinary team (MDT) using inter-disciplinary methods to achieve best outcomes for people with frailty and complex multi-morbidity in the Community. Referrals have increased - 406 in 2023. There were 2,754 direct patient MDT contacts in 2023. Medical capacity for new patients is limited. Alternative ways of working were needed to meet increasing demand. Methods Quality improvement methodologies were employed to enhance efficiency. Existing practices were mapped, deficits highlighted. New practices were trialled in plan-do-study-act format. Results The MDT collaborated to develop structured pathways for Falls and Memory. Criteria were established for triaging referrals, assessment standards, management, post diagnostic support using national/international guidelines (Model of Care for Dementia in Ireland, World Falls Guidelines). More patients were seen via direct-to-MDT pathways and discussed at bi-weekly meetings. Direct referral pathway was instituted from the acute hospital Emergency Department (ED) Frailty Front Door Team to the Hub MDT. ‘One-stop-shop’, multiple, consecutive assessments, while comprehensive, resulted in significant patient fatigue. Moving to parallel assessment reduced appointment frequency and time in the Hub. Staff learned from other disciplines and translated knowledge/skills to tailored patient plans. Case management has prevented ED attendance, particularly for patients with delirium and/or dementia with non-cognitive symptoms. Early integration with Community/Voluntary groups was crucial. Visits from these groups promoted education and relationship building. The Community Connector role has been instrumental in linking people with wellbeing activities in their community. Challenges: Blurring boundaries between roles. Insufficient medical cover represents a barrier to timely patient assessment/management, obstacle to early hospital discharge. Demands on MDT intensify daily. Conclusion Enthusiasm, flexibility, ownership, teamwork, distributed leadership were essential in developing pathways and overcoming difficulties.

SENSE-Cog Lewy: Investigating the Impact of Sensory Loss on the Diagnosis, Clinical Features and Prognosis of Lewy Body Dementia

Abstract Background Lewy Body Dementia (LBD) accounts for 20% of the nearly 65,000 people with dementia in Ireland, but fewer than 5% of those affected receive a formal diagnosis. LBD includes both Parkinson’s disease dementia (PDD) and dementia with Lewy bodies (DLB) and can be characterised by fluctuating and progressive cognitive difficulties, vivid visual hallucinations and REM sleep behaviour disturbances. Sensory function such hearing, vision and olfactory function declines with age—but increasing evidence shows that abnormal patterns of sensory dysfunction can be one of the earliest clinical signs and predictors of progression of neurodegenerative diseases such as Lewy body dementia and Parkinson’s disease dementia. Methods A scoping review was undertaken using Embase, CINAHL, PsychINFO and PubMed. Only reports on people with LBD (DLB and PDD) from any stage, prodromal to late stage were considered. Papers primarily addressing other forms of neurocognitive disorders were excluded. Sensory loss was conceptualised as the loss of smell, vision and hearing. Two reviewers independently assessed each study for inclusion, and disagreements were resolved by a third reviewer. Results Reports on sensory loss in LBD were very few and most often were comparing sensory loss across different dementia types. Strong associations were observed between olfactory loss and particular visual impairment patterns and the severity of both cognitive and non-cognitive DLB symptoms. Olfactory impairment is a potential early biomarker of DLB and PDD and severity of olfactory dysfunction can predict cognitive decline. Visual hallucinations, for example, were found to be closely linked to visual impairment patterns such as pareidolia. Conclusion This study highlights a knowledge gap regarding the patterns of sensory loss in LBD and their relationship with cognitive and non-cognitive LBD symptoms. Sensory assessments represent potentially valuable diagnostic and prognosis tool in LBD, with further research required to understand the aetiological mechanisms underlying sensory impairment in LBD and other dementias.

8 Year Follow up of Patients Diagnosed with Dementia in a Tertiary Memory Service

Abstract Background Approximately 64,000 people live with dementia in Ireland with an expected increase to 150,000 by 2045. Time to presentation with symptoms of cognitive decline varies between cases. The heterogenous nature of dementia makes estimations of an individualised trajectory of decline challenging. Methods Retrospective analysis was undertaken patients (n=17) of those diagnosed with dementia in 2016 whereby outcomes were discernible from records of the organisation. Data were extracted from the clinic Excel database, Patient Information Management System and Electronic Patient Record portal. Diagnosis was verified using the clinic letter at time of diagnosis. Data was processed using Microsoft Excel. Results Mean age was 77 (range 64-84). Diagnostic breakdown was AD 35.2% (n=6); AD/VaD 41.1% (n=7); VaD 23.5% (n=4). Average survival was 64.8 months (range 16-100). The group averaged 6.2 medicines and 4.3 comorbidities – most common cited were Hypertension (13%) Osteoporosis (8.3%); Hypercholesterolaemia & IHD (6.9%); Hypothyroidism & T2DM (5.5%). Average Emergency Department admissions was 2.5 episodes with average 5 admissions. 5 remain alive, 12 RIP – 6 (LTC); 5 hospital and 1 at home. Two live at home, 3 in LTC. Average time living within their own home was 61.1 months (those who died in LTC) and 43.4 (those who died in Hospital). Longest length of admission pre death was 18 days (3-18). Conclusion A diagnosis of dementia affords a level of anxiety with regard to the future. The provision of a roadmap of decline is difficult as the journey of each patient is unique. Within this cohort, patients tended to live at home for long periods of time regardless of their age and despite multiple co morbidities. Where patients were admitted prior to their death, this was usually close to the end of their life. A valuable focus of hope should be placed on enjoying and living the years of possible life after diagnosis.

Establishing a Specialist Physiotherapy service with a Regional Specialist Memory Clinic

Abstract Background Patients with complex motor-cognitive syndromes (E.g. Dementia with Lewy Bodies, Corticobasal syndrome, Progressive Supranuclear Palsy and Huntington’s disease) present with a wide variety of symptoms. Accordingly, these patients have traditionally been managed under different services from Neurology-led movement disorder clinics to age-related services, without dedicated access to specialist physiotherapy input. Recognising this, the Model of Care for Dementia in Ireland recommended that all regional specialist memory services (RSMC) should have a dedicated Clinical Specialist Physiotherapist. The aim of this study was to provide an overview of clinic activity in the first six months of operation. Methods Physiotherapy referrals were collected from September 2023 to March 2024. Referral details were captured using Microsoft Excel and included patient demographics, reason for referral, diagnosis and previous physiotherapy input. Following triage of referrals, patients were placed in one of the following three care pathways: Results 63 referrals were generated. Of these, 15 patients were referred for pre-diagnostic assessment, 46 were referred for rehabilitation, and 2 were referred for secondary prevention. Of those referred for rehabilitation; 18 patients had a diagnosis of DLB, 27 had another form of atypical Parkinsonism, 1 patient had HD. 22 patients had previous physiotherapy input. Conclusion This is the first specialist physiotherapy service in Ireland within a RSMC. This presents a challenge as there is no specific physiotherapy care pathway established for this service elsewhere, but also opportunity for service development and innovation. This overview will help with strategic and service planning and enables KPIs to be established to ensure patients receive a quality service.

Outcomes of Dementia Pathway Referrals Post Comprehensive Geriatric Assessment by a Community Specialist Team for Older Persons

Abstract Background The Model of Care for Dementia in Ireland (2023) outlines targets and recommendations for a Dementia service. A Dementia pathway was developed from a Community Specialist Team (CST) for Older Persons service to a local Memory Clinic service and this was evaluated with reference to the model of care. Methods All adults aged ≥70 years, who received a Comprehensive Geriatric Assessment (CGA) by a CST in 2022, and were referred to a Memory Clinic service, were included. Data including dates of referral and Memory Clinic attendance, age, gender, Clinical Frailty Scale score (CFS) and diagnosis were entered into Excel. These were analysed using descriptive statistics. Results Seventy-nine patients were referred to the Memory Clinic. Twenty-eight (35.5%) attended, with 51 (64.5%) non-attendances. Twenty-seven (34%) cancelled, 13 (16.5%) did not attend, 7 (9%) died before receiving an appointment, and 4 (5%) appointments were deferred at patient request. The mean age of patients referred was 82.39 years (SD=6.876). The male to female ratio of attendees was 1:1.3 and non-attendees was 1:1.9. The median CFS score of both attendees and non-attended was 5 (range 3-7). Eight (21%) of those who did not attend had moved to long term care, representing 10% of total referrals. The median waiting time for attendees was 10.5 months (Range 2-21). Thirteen (46%) patients received a diagnosis of Dementia, 3 (11%) Mild Cognitive Impairment (MCI), 2 (7%) Acquired Brain Injury and 10 (36%) received no memory diagnosis. Conclusion This Dementia pathway does not meet target 14 of the Model of Care. The waiting times exceed 6 weeks, resulting in missed opportunities to provide supports. Timely access to the pathway and supports to attend may increase attendance. A dedicated Memory Assessment and Support Service will address this deficit.

Patient‐Public Involvement (PPI) in Dementia Trials Ireland (DTI): A network to increase capacity and capability to deliver clinical trials for dementia in Ireland

AbstractBackgroundDementia Trials Ireland (DTI) is a newly developed national network to increase capacity and capability to deliver clinical trials for dementia in Ireland. DTI activities are informed by a panel of people with lived experience of dementia and their care partners, following principles of 'patient and public involvement and engagement (PPIE).MethodPeople with lived experience of dementia joined the DTI panel to provide consultation on the design and conduct of industry‐sponsored and investigator‐led clinical trials, providing insight into the lived experience of dementia. Monthly meetings and consultation workshops enable panel members to provide feedback to the DTI trial teams.ResultThirteen PPI panel members represented lived and care partner experience of FTD, AD, LBD, VaD have informed the following DTI network activities: (1) Advising on appropriate language use for trial Participant Information Sheets; (2) Co‐developing the logo for DTI; (3) Advising on our website and video content; (4) Representing DTI at online conferences and workshops; and (5) Providing researchers and clinicians with feedback on the lay summaries of scientific papers.ConclusionThe panel has made meaningful changes to various outputs and activities of the trials' network, ensuring that the perspectives of people with lived or caregiver experience of dementia are included.

215 Including dementia simulation in caregiver education enhances knowledge, confidence, empathy and caregiving approach

Abstract Background An estimated 64,000 people currently live with dementia in Ireland, with this number expected to rise to 150,000 by 2045. For every one person with dementia, there are approximately three others providing support and care. Caregivers can often undergo a decline in physical and mental health and experience feelings of isolation and loneliness. Caregiver education and support can help to mitigate these challenges. Lecture based programmes on their own have a limited effect on understanding the lived experience of the person with dementia, whereas including simulation based empathy building elements can lead to better quality outcomes for caregivers and the person with dementia. A multi-component education programme for family caregivers incorporating dementia simulation, was devised and implemented over 7 weeks. Topics included dementia awareness, delirium, communication, non-cognitive symptoms, self-care, and accessing practical community supports. Methods A survey measuring Person-reported outcomes (PROMS) and Person-reported experience (PREMS) was conducted with 14 caregivers attending two pilot groups. Results 100% of participants felt that the group enhanced their knowledge of dementia and increased their confidence in supporting their loved one as dementia progresses and in relation to non- cognitive symptoms. 100% of the participants found that peer support was extremely beneficial. They also felt that the group was welcoming and felt comfortable sharing in the group. All participants indicated that dementia simulation helped increase understanding of what it is like to have dementia, often reframing their relationship with their loved one. Conclusion The benefits of peer supports and dementia awareness education for caregivers are well documented and this survey supports these assumptions. However, for caregivers the addition of dementia simulation scenarios and role play enhanced their understanding of the lived experience of people with dementia, building empathy and confidence in their role, decreasing stress and leading to changes in caregiving approach.

168 A quality improvement initiative to enhance dementia inclusivity within the physical environment of an older persons’ acute hospital ward

Abstract Background There are currently over 64,000 people living with dementia in Ireland, this number is expected to double by 2045. Direct observation from multiple disciplines highlighted a large cohort of people living with dementia experiencing disorientation, wandering, and falls at ward level. National Guidelines and Strategies state that physical ward environments should be a key consideration for dementia care. Research shows that physical ward environments can be adapted to reduce confusion and agitation and improve wayfinding for those living with dementia. Methods An environmental ward audit was conducted through direct observation, using the environmental checklist from the Irish National Audit of Dementia (INAD-2). The results of the audit were compared with national standards which showed reduced compliance. Adaptations and/or modifications including the installation of orientation clocks, orientation whiteboards and increasing signage and labels to the physical ward were implemented to increase compliance. The ward was re-audited to assess change. Results The results highlighted increased compliance with national standards. Direct observations from the multidisciplinary team identified increased wayfinding and orientation for patients living with dementia on the ward. Multidisciplinary education on dementia inclusivity is essential in fostering a person centred approach to dementia care in the acute ward environment. Conclusion Multidisciplinary collaboration and commitment to dementia inclusive care may enhance the experience of those living with dementia in the acute hospital setting. Barriers such as infection control measures emphasised the need for a collaborative approach to overcome challenges and facilitate change.

Knowledge and attitudes of undergraduate occupational therapy students towards older adults with dementia

Purpose Due to the increasing incidence of dementia in Ireland, there is a need to prepare occupational therapy students for future careers in dementia-focused health care. The purpose of this study are to measure the knowledge and attitudes of Irish undergraduate occupational therapy students towards older people with dementia and examine related variables including year of study, personal and placement dementia experiences and future career choice. Design/methodology/approach Data was gathered using a cross-sectional online survey, incorporating the Alzheimer’s Disease Knowledge Scale and the Dementia Attitudes Scale, which was analysed using descriptive and inferential statistics. Findings Seventy-five responses were gathered and analysed, indicating more advanced occupational therapy students demonstrate higher levels of dementia knowledge, but dementia attitudes remain similar across different year groups. Students with clinical dementia experiences displayed comparable levels of dementia knowledge and attitudes to those without. However, students with familial dementia experiences displayed significantly more positive attitudes. The likelihood of selecting a future career with older adults with dementia significantly related to students’ positive dementia attitudes but not dementia knowledge. Originality/value To the best of the authors’ knowledge, this is the first Irish study that focuses on undergraduate occupational therapy students’ dementia knowledge and attitudes. The results could be used to inform and develop Irish undergraduate occupational therapy programmes.

247 QUALITY IMPROVEMENT IN DEMENTIA CARE: STREAMLINING CARE PATHWAYS IN A PSYCHIATRY OF OLD AGE SERVICE

Abstract Background Dementia is increasingly considered a public health priority worldwide in the context of predicted increased prevalence. In Ireland, there are an estimated 67,000 persons living with dementia and by 2041 it is expected to rise to 145,000 persons. Challenges in dementia care have been highlighted in health services across Europe and the ineffective structure of dementia care with fragmented non-person-centred pathways has been identified. Methods An initial review of the existing cognitive impairment diagnostic pathways in our specialised Psychiatry of Old Age (POA) Service was undertaken. This included surveying the multidisciplinary team to identify challenges, clinical chart review and audit of physical examination equipment. Diagnostic pathway was updated based on findings and informed by the developing national ‘Model of Care for Dementia in Ireland’ and best practice. Results Review findings included lack of standardisation of memory assessment, delays in accessing neuroimaging and laboratory results, gaps in staff training. A care pathway document was developed detailing requirements for care from the point of referral through to cognitive impairment diagnosis. Staff training was completed to accompany the introduction of standardised dementia assessment scales. Access to laboratory/radiology booking was enhanced. A cognitive remediation group was developed by Occupational Therapy as part of post-diagnostic supports for service users. Preliminary data indicates improvements in satisfaction of those attending the group. Physical examination equipment audit resulted in quality improvements. Conclusion We demonstrate that a quality improvement approach can be implemented to enhance assessment, diagnosis and care provided to support diagnosis of cognitive impairment and dementia in POA service. The enhanced diagnostic care pathways will be assessed over time to assess impact on care of service users. Preliminary findings are positive and it is an approach that can be adopted in other services and inform development of national memory service developments.

219 A SOLITARY AWARENESS - PROFILING TIME TO RECOGNITION OF MEMORY LOSS IN A TERTIARY MEMORY SERVICE

Abstract Background Approximately 64,000 people live with dementia in Ireland with expected increases to 150,000 by 2045. Best practice recommends that patients benefit from timely diagnosis. Whilst the presence of cognitive impairment should prompt early referral for diagnostic clarity, patients frequently present with well-established symptoms. In order to understand this phenomenon it is important to understand the way in which symptoms are recognised by the person, companions and casual observers. Methods A chart review was carried out on a convenience sample of patients (n=61) diagnosed with dementia where scores were available from Clinical Dementia Rating Scale (CDR) and AD8. Data extracted included global scores and answers to direct questions regarding symptom recognition by patient and companion. Diagnosis was confirmed using the Electronic Patient Record. Results Mean age was 75 (range 57-87). Diagnostic breakdown comprised: Alzheimer Dementia (AD) in 67% (n=41), mixed AD/Vascular Dementia (VaD) in 19.6% (n=12); behavioural variant Fronterotemporal Dementia (bvFTD) in 1.6% (n=1), Dementia with Lewey Bodies (DLB) in 1.6% (n=1), Primary Progressive Aphasia (PPA) in 4.9% (n=3), Primary Parkinson’s Dementia (PPD) in 1.6% (n=1) and VaD in 1.6% (n=1). Average CDR Global Scale was 1.0 and average AD8 score 6/8. Family noticed symptoms of dementia an average of 12 months longer than the person themself. The incidence of anosognosia was 19% (n=12) and associated with a diagnosis of AD (91.6 %, n=11). Where anosognosia existed, symptoms of memory loss had been identified by family up to 60 months before diagnosis, with average time to recognition of 24 months. For 75% of this anosognosia group, family reported indiscernible symptoms on casual inspection (n=9). Conclusion Where symptoms of memory loss go unrecognised by patients and casual inspection, family may notice changes for up to five years. It is important to educate and empower the public regarding the benefit of a timely dementia diagnosis. Education should focus on supporting family to navigate sensitive conversations in the event of anosognosia and explore ways in which they might encourage timely review.

32 HOLISTIC PERSON-CENTRED CARE FOR PEOPLE LIVING WITH DEMENTIA AND CO EXISTING MENTAL HEALTH ILLNESSES: A CASE FOR INTEGRATION

Abstract Background 65,000 people live with dementia in Ireland, many have co-existing or emerging mental health illnesses and non-cognitive symptoms. During the COVID-19 pandemic there was a need to provide innovative solutions to service provision. As Medicine for the Elderly (MEDEL) and Psychiatry of Later Life (PLL) were established stand-alone services, there was no formalised working relationship, resulting in an overlap of cases and disparity in service provision. Methods A description of three cases to illustrate the joint working interface with MEDEL and PLL. These cases highlight their complex care needs and the speciality input required by both services within a shared catchment area. The age range was 78-88 years. All presented with at least two medical co-morbidities, including vascular risk factors and delirium. Each had at least one mental health illness including new onset psychotic and mood disorders. Sharing of resources including diagnostic services, nursing, medical, occupational therapy, physiotherapy and social work facilitated cost effective holistic care. Results Given the existing structures of MEDEL and PLL, it was possible to link with community partners attached to each service, allowing domiciliary visits for crisis intervention and best use of expertise from both disciplines. This resulted in the provision of timely patient centred care, reduced polypharmacy through a unified pharmacological approach, enhanced communication, shared learning and cost effectiveness. Care that is in the right place at the right time, in line with Sláinte Care, allowed timely access to diagnostics, improved care outcomes and a cohesive response. Conclusion This cohort present with complex care needs. An integrated approach enables patients to receive holistic care without duplication of resources or disparity of treatment and care options. Going forward this should involve a fully integrated memory service, with shared governance.

232 WORKING-UP DEMENTIA, A RETROSPECTIVE COHORT STUDY OF REFERRALS TO A SPECIALIST DEMENTIA SERVICE

Abstract Background Rates of dementia in Ireland are rapidly increasing in line with our ageing population. Cases are predicted to more than double in the next 30 years from a prevalence of 55,000 in 2018, to 141,000 in 2050. Dementia services will be placed under significant pressure. It is essential that patients referred to specialist memory services are appropriately worked-up prior to referral, to ensure efficiency and optimise the running of these services, and also to improve patient experience. Methods We carried out a retrospective review of patients referred to the Psychiatry of Later Life Team for specialist dementia care by General Practitioners. We obtained date of referral to the service, and carried out an electronic chart review to evaluate the work-up performed prior to referral. Our standard work-up criteria consisted of neuroimaging (CT brain or MRI brain), and blood tests including B12, folate, and thyroid function tests within 12-months. Results were analysed descriptively. Results 104 patients were included in the study, from referrals dated Nov 2014-June 2019. Neuroimaging had been performed in 79.8% (n=83) prior to referral- 89.1% CT, 9.6% MRI, 1.2% both CT and MRI. Of those who had neuroimaging, n=37 had been performed in the previous 12-months, representing 35.6% of overall cohort. In terms of blood work-up, 23.1% (n=24) had bloods performed in the 12 months prior to referral- 70.8% B12, folate and thyroid function tests; 20.8% TFTS only; 8.3% B12 and folate levels only). Conclusion Referrals to specialist memory services by General Practice often lack the appropriate first line investigations, which introduces delay in review and the need for further assessment once baseline investigations have been done. There is a need for a standardised work-up prior to referral for optimum running of such services.

Young onset dementia: implications for employment and finances.

People with young onset dementia face unique challenges. Notably, at time of symptom presentation, many people affected by young onset dementia are still employed with significant financial obligations. The aim of this study was to explore the specific impact that young onset dementia has on continued employment and finances and to identify ways to optimise post-diagnostic approaches in this regard. Purposive sampling, with a maximum variation technique, was used to recruit a small but diverse range of people with young onset dementia in Ireland. In-depth semi-structured interviews were conducted, and data were analysed using Reflexive Thematic Analysis. In total, 22 interviews were conducted with 10 people with young onset dementia and 12 spouses and children. Two themes were constructed: impact of young onset dementia on (I) employment and (II) finances. Participants' lived accounts showed the devastating effect of a diagnosis of young onset dementia on working life, and the resultant financial, social, and psychological consequences. Participants reported having to leave paid employment early, reported losing contracts and retiring on medical grounds. There were financial implications caused by loss of income, and many additional expenses owing to dementia were incurred. In some families, spouses had to take up employment at the same time as a caring role to mitigate the loss of income, and young children were anxious at the resultant occupational and financial tensions. People diagnosed with young onset dementia encounter significant challenges associated with employment, and individual and family finances. There is a need for more specific information and guidance from healthcare professionals around employment rights, income support and welfare benefits and the pension status for this group of people. Additionally, healthcare professionals should be cognisant of the additional financial burden people face in young onset dementia when advising on services which incur out-of-pocket costs.

140 FAMILY DEMENTIA SUPPORT TRAINING—AN INTEGRATED CARE APPROACH

Abstract Background There are approximately 64,000 people living with a diagnosis of dementia in Ireland. This number is expected to double to 150,000 by 2045. The growing need for post diagnostic support has been accentuated by the fact that we are living through an unprecedented Pandemic. Our Dementia Training Network identified the need for a localised educational resource for families supporting those diagnosed with dementia across our service. Methods Following a successful pilot in association with the Alzheimer’s Society of Ireland, staff from the Specialist Memory Service, Integrated Care Team, and Primary Care created a service-informed 6 week course aimed at supporting families. A focus group preceded the first course to establish preferred content. The course delivered education on Dementia; Post Diagnostic Steps; Communication; Non cognitive symptoms; Nutrition & hydration; Assistive Technology; Forward planning and Self-care. The multi-dimensional nature of staff delivering the course creates a rich tapestry of advice and information. All staff involved work together to identify, refer and support families living with dementia in the local area. The group takes place in an accessible location and time which accommodates families. Each course attendee completes a questionnaire prior to and after commencing the group. The level of satisfaction will be measured following every course. Results By the end of 2021, the group will have delivered education and support to 36 families. The automatic referral of all families to this resource will assist in building up confidence to support and enhance self-care. The combined participants from the catchment area will become a network of families joined together on their journey. Conclusion This innovative service collaboration enhances the integrated nature of the Post Diagnostic Care pathway. The Integrated care approach has served to enrich the programme and allow for timely support and advice regarding localised supports.

Developing a complex intervention targeting antipsychotic prescribing to nursing home residents with dementia

Background: Antipsychotics are commonly prescribed to people living with dementia in nursing home settings, despite strong guideline recommendations against their use except in limited circumstances. We aimed to transparently describe the development process for a complex intervention targeting appropriate requesting and prescribing of antipsychotics to nursing home residents with dementia in Ireland, by nurses and general practitioners (GPs) respectively. Methods: We report the development process for the ‘Rationalising Antipsychotic Prescribing in Dementia’ (RAPID) complex intervention, in accordance with the ‘Guidance for reporting intervention development studies in health research’ (GUIDED) checklist. The UK Medical Research Council framework for developing and evaluating complex interventions guided our overall approach, incorporating evidence and theory into the intervention development process. To unpack the intervention development process in greater detail, we followed the Behaviour Change Wheel approach. Guided by our stakeholders, we conducted three sequential studies (systematic review and qualitative evidence synthesis, primary qualitative study and expert consensus study), to inform the intervention development. Results: The RAPID complex intervention was developed in collaboration with a broad range of stakeholders, including people living with dementia and family carers, between 2015 and 2017. The finalised RAPID complex intervention was comprised of the following three components; 1) Education and training sessions with nursing home staff; 2) Academic detailing with GPs; 3) Introduction of an assessment tool to the nursing home. Conclusions: This paper describes the steps used by the researchers to develop a complex intervention targeting antipsychotic prescribing to nursing home residents with dementia in Ireland, according to the GUIDED checklist. We found that the GUIDED checklist provided a useful way of reporting all elements in a cohesive manner and complemented the other tools and frameworks used. Transparency in the intervention development processes can help in the translation of evidence into practice.

Developing a complex intervention targeting antipsychotic prescribing to nursing home residents with dementia.

Background: Antipsychotics are commonly prescribed to people living with dementia in nursing home settings, despite strong guideline recommendations against their use except in limited circumstances. We aimed to transparently describe the development process for a complex intervention targeting appropriate requesting and prescribing of antipsychotics to nursing home residents with dementia in Ireland, by nurses and general practitioners (GPs) respectively. Methods: We report the development process for the 'Rationalising Antipsychotic Prescribing in Dementia' (RAPID) complex intervention, in accordance with the 'Guidance for reporting intervention development studies in health research' (GUIDED) checklist. The UK Medical Research Council framework for developing and evaluating complex interventions guided our overall approach, incorporating evidence and theory into the intervention development process. To unpack the intervention development process in greater detail, we followed the Behaviour Change Wheel approach. Guided by our stakeholders, we conducted three sequential studies (systematic review and qualitative evidence synthesis, primary qualitative study and expert consensus study), to inform the intervention development. Results: The RAPID complex intervention was developed in collaboration with a broad range of stakeholders, including people living with dementia and family carers, between 2015 and 2017. The finalised RAPID complex intervention was comprised of the following three components; 1) Education and training sessions with nursing home staff; 2) Academic detailing with GPs; 3) Introduction of an assessment tool to the nursing home. Conclusions: This paper describes the steps used by the researchers to develop a complex intervention targeting antipsychotic prescribing to nursing home residents with dementia in Ireland, according to the GUIDED checklist. We found that the GUIDED checklist provided a useful way of reporting all elements in a cohesive manner and complemented the other tools and frameworks used. Transparency in the intervention development processes can help in the translation of evidence into practice.

A multiple perspective view of personhood in dementia

AbstractPersonhood has been a key influence on the development of person-centred care models in dementia. However, there is ambiguity around the concept and interpretation of personhood, and what it means in practical terms for the delivery of care to people with dementia. This study examines the conceptualisation of personhood within the formal care system for people with dementia in Ireland. A multiple perspective study design examines the experiences of personhood in dementia from the perspectives of people with dementia, family carers and a range of formal carers. Semi-structured interviews with participants were conducted in both community and long-term care settings. Interpretative phenomenological analysis is used to examine the data. A total of 31 participants were interviewed: eight people with dementia, eight family carers and 15 formal carers. There is general consensus on the core elements of personhood among all participants: interests and preferences; lifecourse experiences; social interaction; family; and place. However, there is ambiguity among family carers and formal carers in the interpretation of changes to personhood as the disease progresses. Interpersonal and structural barriers to supporting personhood are identified by all participants. The findings provide guidance on the traits of personhood-enhancing care, including effective communication skills, and the potential of health and social care reform to support the core elements of personhood among people with dementia.

Establishing priorities for psychosocial supports and services among family carers of people with dementia in Ireland.

Many family carers, particularly those caring for people with dementia, report significant personal and social challenges associated with caring. The aim of this article is to identify the range of challenges experienced by family carers of people with dementia and to ascertain their preferences for various supports and services that address those challenges. Three modified nominal group technique (NGT) focus groups were conducted with family carers of people with dementia. The NGT groups were conducted with 17 participants in two stages, focusing separately on personal and social domains. Family carers identified challenges and individually ranked preferences for both existing and new services and supports. Data analysis consisted of qualitative content analysis and summative scoring of individual rankings. Family carers identified the following personal-level challenges: needing a break, social isolation and relationship changes. Family carers' combined preferences for personal-level supports and services to overcome these challenges were day care, family care support groups, short-term respite, long-break respite and social activities. Social challenges referenced by family carers included finances, rights and entitlements and stigma and awareness. Preferences for supports and services to address these social challenges were non-means-tested carer's allowance, legal recognition, carer's support grant, monthly wage and community awareness programmes. Participants ranked day care and non-means-tested carer's allowance as their top priorities under personal and social headings. Increased government investment in these two areas would not only help to maintain family carers' contributions to community-based care in dementia but would also facilitate social inclusion, social connectedness and economic sustainability.

A review of policy and provision of emotional support for people living with early-stage dementia in the Republic of Ireland and call for specialist counselling and psychotherapy services.

Public policy in Ireland recognises that people living with early-stage dementia are likely to require considerable emotional support following diagnosis; anxiety and depression are very common within this population. Yet psychosocial interventions to support emotional health of people who receive a diagnosis of dementia are sparse; there is no mention of counselling and psychotherapy for people living with early dementia in national guidelines, despite a promising evidence base that has amassed internationally in recent decades. This article explores the psychological impact of receiving a diagnosis and the scant offering of emotional and psychological post-diagnostic support that is available for people living with early-stage dementia in Ireland. The author draws attention to the curious tension between the widely recognised psychological benefits of early diagnosis of dementia and the jarring delay in disclosure that continues to prevail across Irish healthcare delivery. The evidence base for counselling and psychotherapy for people living with mild to moderate dementia in regard to anxiety and depression is discussed. Recommendations are made for further research into specialist counselling and psychotherapy interventions with a strong involvement from people living with dementia embedded in both research and design. The author also calls for public policy to reflect the preference of people living with dementia for earlier diagnosis and to highlight the appetite and ability of people living with dementia to engage in psychotherapeutic interventions.