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1.
J Alzheimers Dis ; 93(3): 1017-1031, 2023.
Article in English | MEDLINE | ID: covidwho-2314039

ABSTRACT

BACKGROUND: The COVID-19 pandemic was associated with high mortality and negative consequences for patients with Alzheimer's disease or dementia and their caregivers. Memory clinics play an important role in enabling early dementia diagnosis and providing support for patients and their caregivers. OBJECTIVE: This study investigates the impact of the COVID-19 pandemic and its restrictions on patients of a memory clinic and their caregivers between March 2020 and March 2021. METHODS: We conducted a prospective, single-center, questionnaire-based, observational study to assess consequences and perception of the COVID-19 pandemic on emotion, cognitive function, social living, areas of care, and information retrieval. RESULTS: Results of 255 participants' (mean age 76.78, SD 8.9; 12% cognitively intact, 33% mild cognitive impairment, 55% dementia) and 203 caregivers' COVID-19 questionnaires (valid response rate 71%) could be included in the study. Participants reported a prevalence of psychological symptoms associated with the pandemic between 3-20%. Caregivers living outside compared to those living with the participant reported higher rates of new onset or worsening of neuropsychiatric symptoms in participants since pandemic onset. Patients with dementia showed the lowest use of digital communication before (15.7%) and after (17.1%) pandemic onset in the diagnostic groups. CONCLUSION: The COVID-19 pandemic frequently led to social isolation and reduced cognitive stimulation due to restrictions in elderly persons with cognitive deficits resulting in negative effects on emotional and social levels. We hypothesize that the implementation and sensitization with digital communication in clinical routine could provide a useful tool to counteract these negative effects.


Subject(s)
COVID-19 , Dementia , Humans , Aged , Caregivers/psychology , Dementia/epidemiology , Dementia/psychology , Pandemics , Austria , Prospective Studies , COVID-19/epidemiology , Perception
2.
Dementia (London) ; 22(6): 1205-1226, 2023 Aug.
Article in English | MEDLINE | ID: covidwho-2313779

ABSTRACT

Emotional wellbeing of family carers and people with dementia is associated with not only how each individual copes with stress and conflict, but also by how they cope together. Finding ways to positively cope together was particularly important during COVID-19 lockdown restrictions, when other avenues of emotional support were less available. We explored how carers experienced and used emotion-focused dyadic coping styles during the COVID-19 pandemic. In-depth qualitative interviews were conducted during the pandemic with 42 family carers, supplemented by quality of life scores collected both pre- and during the pandemic and household status. Abductive thematic analysis identified five styles of emotion-focused dyadic coping: common, supportive, hostile, disengaged avoidance and protective. The COVID-19 pandemic left many dyads unsupported. While many carers adapted, reporting increases in quality of life and enjoying the extra time with the person with dementia, others experienced dyadic conflict and reductions in quality of life. This variation was associated with dyadic coping styles, including challenges in using 'positive' styles and the protective use of 'negative' disengaged avoidance in the right situations. Dyadic coping styles also differed as a function of whether the dyad lived together. As many people with dementia are supported by an informal carer, considering how they cope together could help us to better support them. We make suggestions for dyadic interventions tailored by co-residency status that could help dyads identify and communicate coping needs, reconnect following avoidance coping, and replenish their coping resources through social support.


Subject(s)
COVID-19 , Dementia , Humans , Caregivers/psychology , Pandemics , Quality of Life/psychology , Dementia/psychology , Communicable Disease Control , Emotions , Adaptation, Psychological
4.
Dementia (London) ; 22(4): 783-806, 2023 May.
Article in English | MEDLINE | ID: covidwho-2260612

ABSTRACT

OBJECTIVES: Engaging with finances has become increasingly digitalised in recent years, particularly since the COVID-19 pandemic, yet it is unknown how finance management has been affected in people living with dementia. The aim of this qualitative study was therefore to explore how digitalisation and the recent pandemic have affected finance management skills in people with dementia. METHODS: Semi-structured interviews were conducted remotely with people with dementia and unpaid carers living in the UK via phone or Zoom between February and May 2022. Transcripts were coded by one of four different research team members, including two unpaid carers who were public advisers on the project. Data were analysed using inductive thematic analysis. RESULTS: Thirty carers and people with dementia participated, and five overarching themes were identified. Managing finances has been both simplified and made more complicated by digitalising how money is spent and managed, with people with dementia and unpaid carers reporting advantages of using direct debits and debit cards, as well as digital illiteracy barriers for older relatives with dementia. Unpaid carers have received no support in managing their relative's finances, and were found to be burdened by the additional caring duties. CONCLUSIONS: Carers need to be supported in managing their relative's finances as well as with their general well-being due to taking on additional caring duties. Digital systems for finance management need to be user-friendly for people with cognitive impairment, with a need for digital literacy training for middle-aged and older adults to avoid difficulties if they develop dementia, and improved access to a computer/tablet/smart phone.


Subject(s)
COVID-19 , Dementia , Middle Aged , Humans , Aged , Dementia/psychology , Pandemics , Caregivers/psychology , Qualitative Research
5.
Rural Remote Health ; 23(1): 8162, 2023 01.
Article in English | MEDLINE | ID: covidwho-2265943

ABSTRACT

INTRODUCTION: Since the outset of COVID-19, we have become more reliant on technology to stay connected to others. Notable benefits of telehealth have been observed, including increased access to health and community support services for community dwelling people living with dementia and their family caregivers and diminishing barriers such as geographical location, mobility issues and increased cognitive decline. Music therapy is an evidence-based intervention for people living with dementia and has been proven to promote improved quality of life, increase social interaction and provide a form of meaningful communication and expression when language becomes difficult. This project is one of the first internationally to pilot telehealth music therapy for this population. METHODS: This mixed methods action research project has six iterative phases of planning, research, action, evaluation, and monitoring. Public and Patient Involvement (PPI) has been sought from members of The Dementia Research Advisory Team at the Alzheimer Society of Ireland at all stages of the research process to ensure the research remains relevant and applicable to those with dementia. The presentation will briefly outline the phases of the project. RESULTS: Preliminary results from this ongoing research suggest that there is feasibility for telehealth music therapy to provide psychosocial support to this population. Collaboration with PPI contributors resulted in the following research priorities: (1) ensuring a person-centered approach; (2) advanced care planning using music; and (3) the signposting of music related supports for community dwelling people living with dementia. Music therapy is being piloted currently and preliminary results will be outlined. DISCUSSION: Telehealth music therapy has the potential to complement existing rural health and community services for people living with dementia, in particular addressing social isolation. Recommendations regarding the relevance of cultural and leisure pursuits on health and well-being of people living with dementia will be discussed, particularly the development of online access.


Subject(s)
COVID-19 , Dementia , Music Therapy , Music , Telemedicine , Humans , Caregivers/psychology , Dementia/therapy , Dementia/psychology , Independent Living , Quality of Life , Ireland
6.
Aging Clin Exp Res ; 35(4): 729-744, 2023 Apr.
Article in English | MEDLINE | ID: covidwho-2272988

ABSTRACT

Dementia Day Care Centres (DDCCs) are defined as services providing care and rehabilitation to people with dementia associated with behavioural and psychological symptoms (BPSD) in a semi-residential setting. According to available evidence, DDCCs may decrease BPSD, depressive symptoms and caregiver burden. The present position paper reports a consensus of Italian experts of different disciplines regarding DDCCs and includes recommendations about architectural features, requirements of personnel, psychosocial interventions, management of psychoactive drug treatment, prevention and care of geriatric syndromes, and support to family caregivers. DDCCs architectural features should follow specific criteria and address specific needs of people with dementia, supporting independence, safety, and comfort. Staffing should be adequate in size and competence and should be able to implement psychosocial interventions, especially focused on BPSD. Individualized care plan should include prevention and treatment of geriatric syndromes, a targeted vaccination plan for infectious diseases including COVID-19, and adjustment of psychotropic drug treatment, all in cooperation with the general practitioner. Informal caregivers should be involved in the focus of intervention, with the aim of reducing assistance burden and promoting the adaptation to the ever-changing relationship with the patient.


Subject(s)
COVID-19 , Dementia , Humans , Aged , Dementia/therapy , Dementia/psychology , Day Care, Medical , Syndrome , COVID-19/prevention & control , Caregivers/psychology
7.
Health Expect ; 26(2): 613-629, 2023 04.
Article in English | MEDLINE | ID: covidwho-2249525

ABSTRACT

INTRODUCTION: Using co-design processes, we aimed to develop an evidence-based decision guide for family carers and hospital professionals to support decision-making about eating and drinking for hospital patients with severe dementia. METHODS: Following a systematic review, we interviewed people with mild dementia, family carers and hospital professionals in England. We then held co-design workshops with family carers and hospital professionals. In parallel with the workshops, we used a matrix to synthesize data from all studies and to develop a decision guide prototype. The prototype was iteratively refined through further co-design workshops and discussions among researchers and Patient and Public Involvement (PPI) representatives. We conducted user testing for final feedback and to finalize the decision guide. RESULTS: Most participants acknowledged the limited benefits of tube feeding and would not use or want it for someone with severe dementia. However, they found decision-making processes and communication about nutrition and hydration were emotionally demanding and poorly supported in acute hospitals. The co-design groups developed the aims of the decision guide to support conversations and shared decision-making processes in acute hospitals, and help people reach evidence-based decisions. It was designed to clarify decision-making stages, provide information and elicit the values/preferences of everyone involved. It encouraged person-centred care, best-interests decision-making and multidisciplinary team working. From user testing, family carers and hospital professionals thought the decision guide could help initiate conversations and inform decisions. The final decision guide was disseminated and is being used in clinical practice in England. CONCLUSION: We used rigorous and transparent processes to co-design the decision guide with everyone involved. The decision guide may facilitate conversations about nutrition and hydration and help people reach shared decisions that meet the needs and preferences of people with severe dementia. Future evaluation is required to test its real-world impacts. PATIENT OR PUBLIC CONTRIBUTION: People with mild dementia, family carers and hospital professionals contributed to the design of the decision guide through the interviews and co-design workshops. PPI members helped design study procedures and materials and prepare this manuscript.


Subject(s)
Dementia , Humans , Dementia/psychology , Caregivers/psychology , England , Hospitals
8.
Int J Geriatr Psychiatry ; 38(3): e5905, 2023 03.
Article in English | MEDLINE | ID: covidwho-2249043

ABSTRACT

OBJECTIVES: Studies have separately examined the health impacts of the COVID-19 pandemic on persons with dementia and their caregivers. Less attention has been paid to the social and emotional impacts of the pandemic in this population or how these individuals are mutually coping with the pandemic. Guided by the social citizenship theory, this qualitative study sought to characterize how persons with dementia and their adult children are coping during this time with a focus on the strengths demonstrated by persons with dementia. METHODS: Participants were 43 dyads of individuals aged 55 and older with early-stage dementia and their adult children. Discussions between parent-child dyads were recorded. Using reflexive thematic analysis, themes related to social and emotional impacts of the pandemic and coping strategies were identified. RESULTS: Adult children shared with their parents how the pandemic resulted in reduced social engagement and challenging work arrangements. Dyads described how the pandemic positively impacted their relationship, allowing some of them to spend more time together. In coping with the pandemic, adult children provided instrumental support to their parents and parents reciprocated with emotional support. Participants also coped by making meaning of their situation during discussions. CONCLUSIONS: Findings characterize the resilience of persons with dementia and the mutuality of the relationship between both members of the care partner dyad, as both parents and adult children offered support to one another. Facilitating dyadic discussions may be a cost-effective way to sustain social connections and offer ongoing coping support through the pandemic or other challenging circumstances.


Subject(s)
COVID-19 , Dementia , Humans , Adult Children , Pandemics , COVID-19/epidemiology , Adaptation, Psychological , Caregivers/psychology , Dementia/epidemiology , Dementia/psychology
9.
BMC Geriatr ; 23(1): 93, 2023 02 13.
Article in English | MEDLINE | ID: covidwho-2239846

ABSTRACT

BACKGROUND: Evidence-based rehabilitative interventions, if widely implemented, could equip people with dementia and their families to manage life with the condition and reduce the need for health and care services. The aim of this translational study, building on evidence from the GREAT randomised controlled trial, was to develop a foundation for implementing the GREAT Cognitive Rehabilitation intervention in community-based services for people with mild-to-moderate dementia. METHODS: Key elements of the implementation strategy were identifying and supporting managerial and clinical leadership, conducting collaborative planning and target-setting, training and supporting practitioners, and providing external facilitation. We developed implementation plans with, and trained staff in, 14 organisations. We subsequently worked closely with 11 of these, 10 National Health Service organisations and one private home care provider, to support practitioners to deliver GREAT Cognitive Rehabilitation over a 12-month period. Outcome evaluation examined the perspectives of local steering group members, practitioners and service users, and the reach, effectiveness and cost of the intervention. RESULTS: Implementation was disrupted by the COVID-19 pandemic, but six organisations completed at least six months of intervention delivery. Forty-one practitioners, mainly occupational therapists, provided the intervention, and 54 people with dementia completed a course of GREAT Cognitive Rehabilitation. Goal attainment by people with dementia exceeded levels of improvement seen in the original trial. People with dementia, carers, practitioners and steering group members all evaluated the intervention positively, and economic analysis indicated that the intervention could be provided at modest cost. However, we identified a range of mainly organisational barriers that impeded implementation and limited the potential for sustainability. CONCLUSIONS: GREAT Cognitive Rehabilitation benefits people with dementia, can be delivered effectively at modest cost in routine services, and is viewed positively by people with dementia, family carers and practitioners. To fully realise these benefits and achieve widespread and sustainable implementation, however, requires sufficient resources and a reorientation of service priorities towards preventive and rehabilitative approaches. TRIAL REGISTRATION: National Institute for Health Research (NIHR) Central Portfolio Management System, registration number 38994.


Subject(s)
COVID-19 , Dementia , Humans , Dementia/psychology , Cognitive Training , Pandemics , State Medicine
11.
Int J Geriatr Psychiatry ; 38(1): e5878, 2023 01.
Article in English | MEDLINE | ID: covidwho-2219706

ABSTRACT

OBJECTIVES: This study aimed to determine the impact of the Covid-19 pandemic on neuropsychiatric symptoms and antipsychotic use in people with dementia living in nursing homes. METHODS: This was a comparative analysis of baseline data from two large nursing home studies, one conducted during (COVID-iWHELD study) and one prior (WHELD study) to the pandemic. It involves data from 69 and 149 nursing homes, and 1006 and 666 participants respectively. Participants were people with established dementia (score >1 on Clinical Dementia Rating Scale). Resident data included demographics, antipsychotic prescriptions and neuropsychiatric symptoms using the Neuropsychiatric Inventory Nursing Home version. Nursing home data collected were nursing home size and staffing information. RESULTS: Overall prevalence of neuropsychiatric symptoms was unchanged from pre-pandemic prevalence. Mean antipsychotic use across the sample was 32.0%, increased from 18% pre-pandemic (Fisher's exact test p < 0.0001). At a nursing home level, the medians for the low, medium and high tertiles for antipsychotic use were 7%, 20% and 59% respectively, showing a disproportionate rise in tertile three. Residents in these homes also showed a small but significant increase in agitation. CONCLUSION: There has been a significant increase in antipsychotic prescribing in nursing homes since the COVID-19 pandemic, with a disproportionate rise in one third of homes, where median prescription rates for antipsychotics were almost 60%. Strategies are urgently needed to identify these nursing homes and introduce pro-active support to bring antipsychotic prescription rates back to pre-pandemic levels.


Subject(s)
Antipsychotic Agents , COVID-19 , Dementia , Humans , Antipsychotic Agents/therapeutic use , Pandemics , Dementia/drug therapy , Dementia/epidemiology , Dementia/psychology , COVID-19/epidemiology , Nursing Homes
12.
BMC Geriatr ; 22(1): 1001, 2022 12 28.
Article in English | MEDLINE | ID: covidwho-2196064

ABSTRACT

BACKGROUND: Severe dementia is one of the most challenging conditions when caring for people in nursing homes. A manualised non-pharmacological, psychosocial group intervention especially adapted to the needs of people with severe dementia (PWSDs) is currently still lacking. To close this gap, we adapted the evidence-based multicomponent non-pharmacological MAKS intervention (Motor stimulation, ADL stimulation, Cognitive [german: Kognitive] stimulation, and Social functioning in a group setting) to the special needs of PWSDs called the MAKS-s intervention, where the s stands for severe dementia. METHODS: In a prospective, multicentre, cluster-randomised trial with a waitlist control group design, 26 nursing homes comprising 152 PWSDs were randomly assigned to either the MAKS-s intervention group (IG) or control group (CG) - 121 PWSDs were still alive after the 6-month intervention period (t6) and included in the intention-to-treat (ITT) sample. The two primary outcomes, behavioural and psychological symptoms (BPSDs, measured with NPI-NH) and quality of life (QoL, measured with QUALIDEM), and the secondary outcome, activities of daily living (ADLs, measured with ADCS-ADL-sev), were assessed at baseline (t0) and at t6. Mixed ANOVAs were computed to investigate possible effects of the MAKS-s intervention on the outcomes. RESULTS: In the ITT sample, BPSDs and QoL did not change significantly over time, and group assignment did not affect them, although the IG participants had significantly better overall QoL than the CG participants. ADLs decreased significantly over time, but group assignment did not affect them. Analyses in the per protocol (PP) sample showed comparable results, with the exception that the IG participants showed a significantly greater increase in BPSDs than the CG participants did. DISCUSSION: Under the situational conditions of the Covid-19 pandemic, no beneficial effects of the MAKS-s intervention on BPSDs, QoL, or ADLs were observed. This finding also means that under 'normal circumstances' (i.e., if there had been no pandemic), we could not make any statements about the effect or non-effect of MAKS-s. In order to be able to address the hypotheses formulated here, the study will have to be repeated incorporating helpful experiences of the present study. TRIAL REGISTRATION: https://doi.org/10.1186/ISRCTN15722923 (Registered prospectively, 07. August 2019).


Subject(s)
COVID-19 , Dementia , Humans , Quality of Life , Activities of Daily Living , Pandemics , Prospective Studies , Dementia/epidemiology , Dementia/therapy , Dementia/psychology , Nursing Homes
13.
Ageing Res Rev ; 85: 101839, 2023 03.
Article in English | MEDLINE | ID: covidwho-2165086

ABSTRACT

We aimed to estimate the impact of social isolation on cognitive function and mental health among older adults during the two-year-and-a-half COVID-19 period. Pubmed Central, Medline, CINAHL Plus and PsychINFO were searched between March 1, 2020, and September 30, 2022. We included all studies that assessed proportions of older adults with the mean or the median with a minimum age above 60 reporting worsening cognitive function and mental health. Thirty-two studies from 18 countries met the eligibility criteria for meta-analyses. We found that the proportions of older adults with dementia who experienced worsening cognitive impairment and exacerbation or new onset of behavioral and psychological symptoms of dementia (BPSD) were approximately twice larger than that of older adults with HC experiencing SCD and worsening mental health. Stage of dementia, care options, and severity of mobility restriction measures did not yield significant differences in the number of older adults with dementia reporting worsening cognitive impairment and BPSD, while the length of isolation did for BPSD but not cognitive impairment. Our study highlights the impact of social isolation on cognitive function and mental health among older adults. Public health strategies should prioritize efforts to promote healthy lifestyles and proactive assessments.


Subject(s)
COVID-19 , Cognitive Dysfunction , Dementia , Humans , Aged , Mental Health , Public Health , Cognition , Social Isolation , Cognitive Dysfunction/diagnosis , Dementia/psychology
14.
Int J Environ Res Public Health ; 19(24)2022 12 19.
Article in English | MEDLINE | ID: covidwho-2163413

ABSTRACT

The COVID-19 pandemic has exacerbated the difficulties faced by caregivers who have to provide continuous '24/7' care to persons with dementia with minimal formal and informal support. While caregivers have reported heightened levels of caregiving distress and burden during the pandemic, there remains a dearth of research pertaining to their lived experiences of providing continuous care with little respite and the corresponding physical, psychosocial and emotional impacts of caregiving '24/7'. The present study uses data obtained from interviews with dementia caregivers (N = seven) that were collected as part of a larger study on Carer Matters, a hospital-based holistic caregiver support program held during COVID-19, to conduct a secondary thematic analysis. The findings revealed three themes that defined the shared experiences of '24/7' caregivers: (1) A World Overturned, which refers to the increase in caregiving intensity and burden due to the pandemic; (2) Burning on Both Ends, which refers to the impossible balance between caregiving and their personal lives; and (3) At Wits' End, which refers to an overwhelming sense of hopelessness and helplessness over their caregiving situation. These findings highlight the challenges and unsustainability of '24/7' caregiving and the detrimental impact that round-the-clock care wields on caregivers' physical and mental well-being. Implications and recommendations are discussed in accordance with the cultural particularities of the study's Asian context (Singapore), with calls for greater caregiver support to be better integrated into society and the community, especially at the neighborhood and grassroots level, to alleviate caregiving burden and safeguard their well-being.


Subject(s)
COVID-19 , Dementia , Humans , Pandemics , COVID-19/epidemiology , Caregivers/psychology , Caregiver Burden , Qualitative Research , Dementia/psychology
15.
BMC Geriatr ; 22(1): 852, 2022 11 12.
Article in English | MEDLINE | ID: covidwho-2139162

ABSTRACT

BACKGROUND: Elder abuse is a serious issue with a global prevalence of 15.7% in the community setting. Persons with dementia are at higher risk of elder abuse than the older population in general. With a high and increasing prevalence of dementia this issue cannot be neglected. Hence, the aims of this study were 1) to describe the proportion of abusive episodes among home-dwelling persons with dementia and their informal caregivers, and 2) to explore differences between informal caregivers who have reported committing and not committing abusive acts. METHODS: A cross-sectional survey was conducted among informal caregivers of home-dwelling persons with dementia in Norway from May to December 2021 with a total of 549 participants. RESULTS: Two-thirds of informal caregivers had committed at least one abusive episode toward the person with dementia in the past year (63.5% psychological abuse, 9.4% physical abuse, 3.9% financial abuse, 2.4% sexual abuse, 6.5% neglect). One-third of informal caregivers had experienced aggression from the person with dementia (33.9% psychological abuse, 7.8% physical abuse, 1.1% financial abuse, 1.4% sexual abuse). Tests for independence showed that the risk of abusive episodes from informal caregivers toward persons with dementia was higher when the informal caregiver was a spouse/partner of the person with dementia and if they experienced aggression from the person with dementia. CONCLUSIONS: The results demonstrate that a majority of informal caregivers commit some form of abusive episodes, and episodes that fall within the scope of psychological abuse are most frequent. This study expands knowledge about elder abuse among home-dwelling persons with dementia. Increased understanding of the dynamics of abuse is essential to be able to reduce risk and prevent abuse.


Subject(s)
Dementia , Elder Abuse , Humans , Aged , Caregivers/psychology , Cross-Sectional Studies , Dementia/diagnosis , Dementia/epidemiology , Dementia/psychology , Elder Abuse/psychology , Norway/epidemiology
16.
J Psychosoc Nurs Ment Health Serv ; 60(10): 7-10, 2022 Oct.
Article in English | MEDLINE | ID: covidwho-2055522

ABSTRACT

As a universal human reaction to perceived and/or actual loss, grief is becoming increasingly pervasive at all levels of society. Among the broad spectrum of loss experiences, those associated with dementia are perhaps of the most complex. The shift toward considering loss and grief within the context of dementia caregiving is promising. However, pre-loss grief is understudied, and interventions are lacking. Only few studies have evaluated the effectiveness of pre-loss psychosocial grief interventions for dementia caregivers. Preliminary findings from an ongoing clinical trial testing the effects of an 8-week, group-based online video intervention with dementia caregivers indicate that compared to precoronavirus disease 2019 pandemic, the experience of loss and separation was exacerbated by loss of control and severe physical contact restrictions in long-term care facilities. Finding effective grief interventions that can be translated into clinical and community-based environments is necessary to alleviate dementia caregivers' emotional distress and improve their quality of life. [Journal of Psychosocial Nursing and Mental Health Services, 60(10), 7-10.].


Subject(s)
Dementia , Caregivers/psychology , Dementia/psychology , Emotions , Grief , Humans , Quality of Life
17.
Stud Health Technol Inform ; 297: 323-330, 2022 Sep 02.
Article in English | MEDLINE | ID: covidwho-2022602

ABSTRACT

In recent years, thanks to advances in medicine and the role of prevention, life expectancy has experienced rapid growth (from 77.6 to 81.3 years), resulting in an increase in Non-Communicable Diseases (NCDs) and years lived with disability. One of these is dementia, with about 7 million people currently affected in Europe while the number is set to double by 2050. These patients are complex due to the serious changes in their cognitive sphere, altering perceptions of their physical space. Because of age and multimorbidity, they are the most frequent users of healthcare facilities, but these structures often are not suitable to them. For example, during the COVID-19 pandemic, healthcare facilities demonstrated criticalities in structural and social issues. To this end, a rethinking of these spaces is urgent, and the use of Evidence-Based Design (EBD, the design based on findings from scientific research) can be a method to create safe and suitable environments. This study aims to develop an evaluation framework to assess the design quality of healthcare facilities for people with dementia. A systematic literature review was conducted to define a set of requirements that the space must have to be prosthetic for the patient. The framework consists of three macro areas (i.e., physical, social, and cognitive aspects), seven criteria, and 24 sub criteria. The proposed framework is a starting point for the development of inclusive projects for people with dementia and cognitive disabilities. Architecture has recently begun to approach the topic of dementia, especially in Italy. Therefore, it is urgent to investigate which are the main aspects to be considered in the design and renovations of facilities to make them as therapeutic and prosthetic as possible, creating places where the wellbeing of patients is the priority, both physical and psychological. To this end, EBD needs to become a habit for designers to create facilities suitable for people with both cognitive impairments and for every user, in line with the principles of Universal Design.


Subject(s)
COVID-19 , Dementia , Delivery of Health Care , Dementia/psychology , Dementia/therapy , Health Facilities , Humans , Pandemics
18.
J Med Internet Res ; 24(8): e37434, 2022 08 01.
Article in English | MEDLINE | ID: covidwho-2022369

ABSTRACT

BACKGROUND: New research fields to design social robots for older people are emerging. By providing support with communication and social interaction, these robots aim to increase quality of life. Because of the decline in functioning due to cognitive impairment in older people, social robots are regarded as promising, especially for people with dementia. Although study outcomes are hopeful, the quality of studies on the effectiveness of social robots for the elderly is still low due to many methodological limitations. OBJECTIVE: We aimed to review the methodologies used thus far in studies evaluating the feasibility, usability, efficacy, and effectiveness of social robots in clinical and social settings for elderly people, including persons with dementia. METHODS: Dedicated search strings were developed. Searches in MEDLINE (PubMed), Web of Science, PsycInfo, and CINAHL were performed on August 13, 2020. RESULTS: In the 33 included papers, 23 different social robots were investigated for their feasibility, usability, efficacy, and effectiveness. A total of 8 (24.2%) studies included elderly persons in the community, 9 (27.3%) included long-term care facility residents, and 16 (48.5%) included people with dementia. Most of the studies had a single aim, of which 7 (21.2%) focused on efficacy and 7 (21.2%) focused on effectiveness. Moreover, forms of randomized controlled trials were the most applied designs. Feasibility and usability were often studied together in mixed methods or experimental designs and were most often studied in individual interventions. Feasibility was often assessed with the Unified Theory of the Acceptance and Use of Technology model. Efficacy and effectiveness studies used a range of psychosocial and cognitive outcome measures. However, the included studies failed to find significant improvements in quality of life, depression, and cognition. CONCLUSIONS: This study identified several shortcomings in methodologies used to evaluate social robots, resulting in ambivalent study findings. To improve the quality of these types of studies, efficacy/effectiveness studies will benefit from appropriate randomized controlled trial designs with large sample sizes and individual intervention sessions. Experimental designs might work best for feasibility and usability studies. For each of the 3 goals (efficacy/effectiveness, feasibility, and usability) we also recommend a mixed method of data collection. Multiple interaction sessions running for at least 1 month might aid researchers in drawing significant results and prove the real long-term impact of social robots.


Subject(s)
Dementia , Robotics , Adult , Aged , Dementia/psychology , Dementia/therapy , Feasibility Studies , Humans , Quality of Life , Social Interaction
19.
Dementia (London) ; 21(8): 2499-2516, 2022 Nov.
Article in English | MEDLINE | ID: covidwho-2021019

ABSTRACT

Art workshops have been looked at before in terms of impact for people with dementia but never those conducted remotely during a pandemic lockdown. Two artists, working with local museums, provided Art workshops for people with dementia and their caregivers. Due to the first Covid 19 lockdown in the UK, the artists set up a weekly delivery service of Home Art Boxes to thirty-three people with dementia and their caregivers over a period spanning 11 months. The artists received funding from local organisations and the Community Lottery Fund. Thematic analysis of the feedback from the participants regarding the project and the artists themselves provided the data for this evaluation of the project. Seven main themes were identified: organisation of the project; community and connections; supporting the caregivers; enjoyment and enrichment; well-being and cognitive benefits of the projects; equipment and instructions; and drawbacks within the project. The participants' feedback enabled the artists to improve the contents and instructions given each week so that they were able to adjust the activities for those people with dementia whose condition was declining. Implications are that remote Art workshops are possible during lockdown restrictions, but that personal communication is equally important.


Subject(s)
COVID-19 , Dementia , Humans , Caregivers/psychology , Dementia/psychology , COVID-19/epidemiology , Communicable Disease Control , Pandemics
20.
Int J Geriatr Psychiatry ; 37(10)2022 10.
Article in English | MEDLINE | ID: covidwho-2013503

ABSTRACT

BACKGROUND AND OBJECTIVES: Research into people with dementia's experiences of the Covid-19 pandemic has tended to focus on vulnerabilities and negative outcomes, with the risk of reproducing a discourse in which people with dementia are positioned as passive. Informed by concepts positioning people with dementia as 'active social agents', we aimed to identify the pandemic-related challenges faced by people recently diagnosed with dementia and examine the ways in which they actively coped with, and adapted to, these challenges. RESEARCH DESIGN AND METHODS: In-depth interviews with 21 people recently diagnosed with dementia, recruited through an existing national cohort. Data was analysed thematically using Framework. FINDINGS: Key challenges included reduced social contact, loneliness and loss of social routines; difficulties accessing and trusting health services; dementia-unfriendly practices; and disparate experiences of being able to 'get out' into the physical neighbourhood. People with dementia responded to challenges by maintaining and extending their social networks and making the most of 'nodding acquaintances'; learning new skills, for communication and hobbies; supporting others, engaging in reciprocal exchange and valuing connection with peers; seeking help and advocacy and challenging and resisting dementia-unfriendly practices; maintaining and adapting habitual spatial practices and being determined to 'get out'; and employing similar emotional coping strategies for the pandemic and dementia. CONCLUSIONS: Support for people with dementia, especially during public health crises when carers and services are under pressure, should involve utilising existing capacities, appropriately supporting the acquisition of new knowledge and skills, 'safety-netting' through the availability of a named professional, advocacy and support and use of 'check-in calls' and creating supportive social and environmental circumstances for people with dementia to sustain their own well-being.


Subject(s)
COVID-19 , Dementia , Adaptation, Psychological , COVID-19/epidemiology , Caregivers/psychology , Dementia/epidemiology , Dementia/psychology , Humans , Pandemics
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