Based on data from 5970 case notes of patients seen for initial assessment between January and August 2021, this report looks at community-based memory assessment services in England and Wales. The report found that the average waiting time from referral to diagnosis has increased to 17.7 weeks since 2019, up from 13 weeks. It also found that over 70% of services experienced periods of closure, and over 80% had staff redeployed during 2020. Other key findings include: 35% of patients had an appointment via phone or video call, while 45% took place at their usual place of residence; as part of their initial assessment, 61% of patients had a discussion recorded about their eyesight, 58% had a discussion recorded about hearing, and 76% had a falls history discussed and recorded; CT/MRI scans were requested for 47% of patients, with variation in requests of 0-97.4% of patients per service. This range implies that variation is at service/protocol level, rather than assessed as appropriate in each case. The report goes on to make a number of recommendations, including a call for services to use quality improvement methods to actively monitor waiting times from referral to diagnosis, and identify problem areas and barriers to access, including demographic and other factors (e.g. care home residents), as services continue to recover from the impact of the COVID-19 pandemic and associated service closures and staff redeployment.
(Edited publisher abstract)
Based on data from 5970 case notes of patients seen for initial assessment between January and August 2021, this report looks at community-based memory assessment services in England and Wales. The report found that the average waiting time from referral to diagnosis has increased to 17.7 weeks since 2019, up from 13 weeks. It also found that over 70% of services experienced periods of closure, and over 80% had staff redeployed during 2020. Other key findings include: 35% of patients had an appointment via phone or video call, while 45% took place at their usual place of residence; as part of their initial assessment, 61% of patients had a discussion recorded about their eyesight, 58% had a discussion recorded about hearing, and 76% had a falls history discussed and recorded; CT/MRI scans were requested for 47% of patients, with variation in requests of 0-97.4% of patients per service. This range implies that variation is at service/protocol level, rather than assessed as appropriate in each case. The report goes on to make a number of recommendations, including a call for services to use quality improvement methods to actively monitor waiting times from referral to diagnosis, and identify problem areas and barriers to access, including demographic and other factors (e.g. care home residents), as services continue to recover from the impact of the COVID-19 pandemic and associated service closures and staff redeployment.
(Edited publisher abstract)
Subject terms:
dementia, memory, assessment, waiting lists, access to services, Covid-19;
Design and Methods: A systematic search of 6 key databases found 11,895 citations published between 2010 and 2021. Studies were included if they involved community-dwelling older adults with or without cognitive impairment arising from acquired brain injury, mild cognitive impairment, or dementia, and if they evaluated everyday smartphone or tablet device use for cognition, memory, or activities...
(Edited publisher abstract)
Background and Objectives: A systematic review was conducted to explore the use of smartphones and tablet computers as cognitive and memory aids by older adults with and without cognitive impairment, specifically the effects of smartphone and tablet use on participants’ cognition and memory, and the barriers and facilitators to smartphone and tablet use for cognitive and memory support. Research Design and Methods: A systematic search of 6 key databases found 11,895 citations published between 2010 and 2021. Studies were included if they involved community-dwelling older adults with or without cognitive impairment arising from acquired brain injury, mild cognitive impairment, or dementia, and if they evaluated everyday smartphone or tablet device use for cognition, memory, or activities of daily living. Results: A total of 28 papers were included in the narrative synthesis. There was some evidence that the use of smartphones and tablets could aid cognitive function in older adults without cognitive impairment, particularly executive function and processing speed. There was modest evidence that smartphone and tablet use could support memory in both older adults without cognitive impairment and those with acquired brain injury and dementia. Discussion and Implications: Smartphones and tablets were seen by users as acceptable, enjoyable, and nonstigmatizing alternatives to conventional assistive technology devices; however, current use of smartphone and tablet devices is hindered by the digital literacy of older adults, a lack of accommodation for older adult users' motor and sensory impairments, and a lack of input from clinicians and researchers. Much of the evidence presented in this review derives from case studies and small-scale trials of smartphone and tablet training interventions. Further research is needed into older adults' use of smartphones and tablets for cognitive support before and after the onset of cognitive impairment in order to develop effective evidence-based smart technology cognition and memory aids.
(Edited publisher abstract)
Health and Social Care Delivery Research, 10(10), 2022, p.180. Online only
Publisher:
National Institute for Health Research
Place of publication:
London
Background: Mild cognitive impairment in older adults is a risk factor for dementia. Mild cognitive impairment is a result of a diverse range of underlying causes and may progress to dementia, remain stable or improve over time. Objectives: We aimed to assess the evidence base around the assessment and management pathway of older adults with mild cognitive impairment in community/primary care...
(Edited publisher abstract)
Background: Mild cognitive impairment in older adults is a risk factor for dementia. Mild cognitive impairment is a result of a diverse range of underlying causes and may progress to dementia, remain stable or improve over time. Objectives: We aimed to assess the evidence base around the assessment and management pathway of older adults with mild cognitive impairment in community/primary care, hospital and residential settings. Data sources: In January 2021, we searched MEDLINE, EMBASE, PsycInfo, Scopus, Cumulative Index to Nursing and Allied Health Literature, The Cochrane Library (i.e. Cochrane Database of Systematic Reviews and Cochrane Central Register of Controlled Trials), Science Citation Index and Social Science Citation Index. The search was limited to studies published in English between 2010 and 2020. Grey literature and citation searches were also performed. Methods: We performed two separate evidence reviews: (1) a descriptive review with narrative synthesis focusing on diagnosis, service provision and patient experience; and (2) a critical interpretive synthesis of evidence on the advantages and disadvantages of 'mild cognitive impairment' as a diagnostic label. Results: A total of 122 studies were included in the descriptive review, of which 29 were also included in the critical interpretive synthesis. Study participants were most commonly recruited from populations of community-living older adults or those who had sought medical help from their general practitioner for memory problems. Follow-up searching identified a further 11 studies for the critical interpretive synthesis. The descriptive review identified multiple barriers to efficient diagnosis, starting with patient reluctance to seek help. General practitioners have a variety of cognitive tests available, but substantial numbers of patients meeting criteria for dementia do not have a diagnosis recorded. Patients may be referred to a memory clinic, but these clinics are mainly intended to identify and support people with dementia, and people with mild cognitive impairment may be discharged back to their general practitioner until symptoms worsen. Availability of scanning and biomarker tests is patchy. Qualitative studies show that patients with mild cognitive impairment and their carers find the process of investigation and diagnosis difficult and frustrating to negotiate. The key finding from the critical interpretive synthesis was that the need for a 'timely' diagnosis outweighs the ongoing debate about the value, or otherwise, of early investigation and labelling of memory problems. Determining what is a timely diagnosis involves balancing the perspectives of the patient, the health system and the clinician. Conclusions: The two reviews reported here have applied different 'lenses' to the same body of evidence. Taken together, the reviews highlight the importance of a timely diagnosis for memory problems and identify barriers to obtaining such a diagnosis, from reluctance to seek help through to patchy availability of advanced diagnostic tests. Limitations: The review was primarily descriptive, reflecting the prespecified review questions. Study selection was complicated by lack of a consistent definition of mild cognitive impairment and its overlap with other memory disorders. It was not possible to employ double study selection, data extraction or quality assessment, although processes of checking and verification were used throughout the review. Future work: Priorities include evaluating remote methods of memory assessment and preparing for the likely future availability of disease-modifying treatments for early dementia. Research is needed on the investigation of memory problems in hospital and social care settings.
(Edited publisher abstract)
Subject terms:
community care, care pathways, dementia, systematic reviews, needs assessment, cognitive impairment, assessment, older people, memory, evidence, residential care, primary care, diagnostic tests, diagnosis;
International Journal of Geriatric Psychiatry, 37(1), 2022,
Publisher:
Wiley
Objective: To identify the prevalence and characteristics of people living with dementia (PLWD) lost to follow-up (LTFU) from a specialized dementia care clinic and to understand factors influencing patient follow-up status. Methods: the researchers conducted a retrospective chart review of PLWD seen at a dementia care clinic 2012–2017 who were deceased as of 2018 (n = 746). Participants were...
(Edited publisher abstract)
Objective: To identify the prevalence and characteristics of people living with dementia (PLWD) lost to follow-up (LTFU) from a specialized dementia care clinic and to understand factors influencing patient follow-up status. Methods: the researchers conducted a retrospective chart review of PLWD seen at a dementia care clinic 2012–2017 who were deceased as of 2018 (n = 746). Participants were evaluated for follow-up status at the time of death. Generalized linear regression was used to analyze demographic and diagnostic characteristics by follow-up status. Text extracted from participant medical records was analyzed using qualitative content analysis to identify reasons patients became LTFU. Results: Among PLWD seen at a dementia care clinic, 42% became LTFU before death, 39% of whom had chart documentation describing reasons for loss to follow-up. Increased rates of LTFU were associated with female sex (risk ratio 1.27, [95% confidence interval 1.09–1.49]; p = 0.003), educational attainment of high school or less (1.34, [1.13–1.61]; p = 0.001), and death in a long-term care facility (1.46, [1.19–1.80]; p = 0.003). Commonly documented reasons for not returning for care at the clinic included switching care to another provider (42%), logistical difficulty accessing care (26%), patient-family decision to discontinue care (24%), and functional challenges in accessing care (23%). Conclusions: PLWD are LTFU from specialized memory care at high rates. Attention to care coordination, patient–provider communication, and integrated use of alternative care models such as telehealth are potential strategies to improve care.
(Edited publisher abstract)
Purpose: This paper aims to describe three dementia assessment services for people with intellectual disabilities to provide professionals with insight into planning this type of service. Design/methodology/approach: Three services in England were contacted via email and telephone to collect data on their service provision. They were asked about the average age of individuals when receiving...
(Edited publisher abstract)
Purpose: This paper aims to describe three dementia assessment services for people with intellectual disabilities to provide professionals with insight into planning this type of service. Design/methodology/approach: Three services in England were contacted via email and telephone to collect data on their service provision. They were asked about the average age of individuals when receiving a baseline assessment, frequency of follow-up assessment, assessment instruments used and descriptive aspects of their services. Findings: All three services offered proactive dementia assessment services to people with Down's syndrome (DS), with one service providing systematic screening via the GP. None offered proactive screening to people with intellectual disabilities who did not have a diagnosis of DS. All offered reactive assessment to this population if they experienced a decline in function. Services differed in terms of age at which baseline assessments were offered, frequency of follow-up and instruments used. Originality/value: To the best of the authors’ knowledge, this is the first paper to compare dementia assessment provision between different services in England.
(Edited publisher abstract)
Dementia: the International Journal of Social Research and Practice, 20(7), 2021, pp.2323-2339.
Publisher:
Sage
Research on caregiver identity in the context of memory impairment has focused primarily on more advanced stages of the cognitive impairment trajectory (e.g., dementia caregivers), failing to capture the complex dynamics of early caregiver identity development (e.g., MCI; mild cognitive impairment caregivers). The aim of this study was to develop a nuanced understanding of how caregiver identity
(Edited publisher abstract)
Research on caregiver identity in the context of memory impairment has focused primarily on more advanced stages of the cognitive impairment trajectory (e.g., dementia caregivers), failing to capture the complex dynamics of early caregiver identity development (e.g., MCI; mild cognitive impairment caregivers). The aim of this study was to develop a nuanced understanding of how caregiver identity develops in family and friends of persons living with MCI. Using constructivist grounded theory (ConGT), this study explored caregiver identity development from 18 in-depth interviews with spouses (n = 13), children (n = 3), and friends (n = 2) of persons recently diagnosed with MCI. The overarching themes influencing MCI caregiver identity development included MCI changes, care-related experiences, “caregiver” interpretation, and approach/avoidance coping. These themes influenced how participants primarily identified, represented as I am a caregiver, I am not a caregiver, or liminality (i.e., between their previous identity and a caregiver identity). Irrespective of their current self-identification, all conveyed thinking about their “future self,” as providing more intensive care. MCI caregiver identity development in family and friends is a fluid and evolving process. Nearly all participants had taken on care tasks, yet the majority of these individuals did not clearly identify as caregivers. Irrespective of how participants identified, they were engaging in care, and would likely benefit from support with navigating these changes and their new, ambiguous, and evolving roles.
(Edited publisher abstract)
Subject terms:
cognitive impairment, carers, self-concept, memory, stress, family members;
Dementia: the International Journal of Social Research and Practice, 20(7), 2021, pp.2307-2322.
Publisher:
Sage
Background: People with memory disorders often need care and help from family carers and health and social care providers. Due to the deterioration of cognitive capacity and language skills, they may be unable to convey their thoughts and care preferences to other people. As a result, their agency may become restricted. We investigated the descriptions provided by people with memory disorders and spousal carers of their influence on care in encounters with formal care providers. Methods: Qualitative thematic analysis was used to identify, analyze, and report themes that describe encounters with professionals in different social or healthcare environments. In-depth interview data were gathered from 19 spouse carers and 15 persons with memory disorders. Findings: Three themes out of four describe how people with memory disorders and their spouse carers influence formal care: Acquiescence, negotiating care decisions, and taking control. The fourth theme describes lack of influence. People with memory disorders and their spouse carers have ways to influence care, but spouse carers identified more ways of doing so. Both either accepted and followed the care guidelines by the formal carers or took control of the situation and made their own decisions. Spouse carers also sought to influence care decisions through negotiations with formal carers. When formal carers’ decisions were experienced as inconsistent or the rationale of their actions difficult to follow, the possibilities to influence care were limited. Conclusions: People with memory disorders and their family carers are often in a disadvantaged position as they lack power over the health and social care decision-making during the illness, which is often guided by structural factors. To support the agency of people with memory disorders and to promote shared decision-making, clarification of the service structure and clearer communication between the different parties involved in care are required.
(Edited publisher abstract)
Background: People with memory disorders often need care and help from family carers and health and social care providers. Due to the deterioration of cognitive capacity and language skills, they may be unable to convey their thoughts and care preferences to other people. As a result, their agency may become restricted. We investigated the descriptions provided by people with memory disorders and spousal carers of their influence on care in encounters with formal care providers. Methods: Qualitative thematic analysis was used to identify, analyze, and report themes that describe encounters with professionals in different social or healthcare environments. In-depth interview data were gathered from 19 spouse carers and 15 persons with memory disorders. Findings: Three themes out of four describe how people with memory disorders and their spouse carers influence formal care: Acquiescence, negotiating care decisions, and taking control. The fourth theme describes lack of influence. People with memory disorders and their spouse carers have ways to influence care, but spouse carers identified more ways of doing so. Both either accepted and followed the care guidelines by the formal carers or took control of the situation and made their own decisions. Spouse carers also sought to influence care decisions through negotiations with formal carers. When formal carers’ decisions were experienced as inconsistent or the rationale of their actions difficult to follow, the possibilities to influence care were limited. Conclusions: People with memory disorders and their family carers are often in a disadvantaged position as they lack power over the health and social care decision-making during the illness, which is often guided by structural factors. To support the agency of people with memory disorders and to promote shared decision-making, clarification of the service structure and clearer communication between the different parties involved in care are required.
(Edited publisher abstract)
Subject terms:
memory, cognitive impairment, informal care, carers, qualitative research, decision making;
Introduction: Cognitive Stimulation Therapy (CST) is a well-established intervention for people with dementia shown to improve cognition and quality of life. Past research includes development of a longer term ‘maintenance CST’ and an individual CST programme. Previous reviews of CST have focused on quantitative outcomes or excluded certain formats of CST. This review aimed to fill this gap...
(Edited publisher abstract)
Introduction: Cognitive Stimulation Therapy (CST) is a well-established intervention for people with dementia shown to improve cognition and quality of life. Past research includes development of a longer term ‘maintenance CST’ and an individual CST programme. Previous reviews of CST have focused on quantitative outcomes or excluded certain formats of CST. This review aimed to fill this gap by evaluating how the voices of facilitators, carers and people with dementia in qualitative studies of CST can contribute to our understanding of its implementation and how it is experienced. Methods: The current systematic review explored the experience and perspectives of people with dementia, facilitators and carers. Thematic Analysis was used to analyse this data, alongside guidance on synthesising qualitative findings. Results: A systematic literature search retrieved 10 relevant studies using qualitative methodology. Eighteen themes were generated, which were grouped into three categories: ‘Acceptability and feasibility’, ‘Features of CST’ and ‘Key outcomes’. Conclusions: To our knowledge, this is the only review to explore solely qualitative studies of CST. Findings provided insight into the shared features, outcomes and factors affecting implementation, and suggested theories for discrepancies between quantitative and qualitative findings in the literature. Some of the common themes were also in keeping with past reviews.
(Edited publisher abstract)
Dementia: the International Journal of Social Research and Practice, 20(4), 2021, pp.1375-1407.
Publisher:
Sage
Aim: Reminiscence therapy is a popular therapeutic intervention for people with dementia. This review set out to provide a better understanding of reminiscence therapy through a deeper analysis of its contents and delivery. Method: This review examined 22 studies from the most recent Cochrane review (Woods, B., O’Philbin, L., Farrell, E. M., Spector, A. E., & Orrell, M. (2018). Reminiscence...
(Edited publisher abstract)
Aim: Reminiscence therapy is a popular therapeutic intervention for people with dementia. This review set out to provide a better understanding of reminiscence therapy through a deeper analysis of its contents and delivery. Method: This review examined 22 studies from the most recent Cochrane review (Woods, B., O’Philbin, L., Farrell, E. M., Spector, A. E., & Orrell, M. (2018). Reminiscence therapy for dementia. Cochrane Database of Systematic Reviews, 3, Article 001120) and addressed the following research questions: (1) What are the components of reminiscence therapy? (2) Who delivers reminiscence therapy? (3) How is reminiscence therapy delivered? (4) Is reminiscence therapy underpinned by a theoretical framework? (5) Is reminiscence therapy delivered according to a programme/model? (6) Are there commonalities in the reminiscence therapy components utilised? Multiple and layered narrative analyses were completed. Findings: Thirteen reminiscence therapy components were identified. ‘Memory triggers’ and ‘themes’ were identified as the most common but were found not to be consistently beneficial. Reminiscence therapy was typically delivered in a care setting using a group approach; however, there was no consistency in session composition, intervention duration, as well as the training and supervision provided to facilitators. Operationalisation of theory within reminiscence therapy was not identified. Reminiscence therapy was not consistently delivered according to a programme/model. Lastly, as a result of a small number of studies, the components ‘life stages’, ‘activities’ and ‘family-only sessions’, showed beneficial promise. In summary, this review highlights that reminiscence therapy needs more consistency in content and delivery, in addition to a clear theoretical framework.
(Edited publisher abstract)
University of Oxford, Centre for Evidence-Based Medicine
Publication year:
2020
Place of publication:
Oxford
A rapid review to identify evidence for which non-technology based activities that can be delivered at home by family carers are effective in maintaining cognitive function in people with dementia who are socially isolating during COVID-19. These interventions can include reminiscence therapy, cognitive stimulation therapy, music-based interventions, art therapy or meaningful activities...
(Edited publisher abstract)
A rapid review to identify evidence for which non-technology based activities that can be delivered at home by family carers are effective in maintaining cognitive function in people with dementia who are socially isolating during COVID-19. These interventions can include reminiscence therapy, cognitive stimulation therapy, music-based interventions, art therapy or meaningful activities. The review found very few studies where family carers were trained or supported to deliver an intervention within the home environment. However, it identified a small body of evidence to suggest that activities delivered at home by family carers may have some positive effects on cognition and mood. The evidence suggests that engaging people with dementia in activities that they find enjoyable or those that link to past work/hobbies can be helpful in giving a sense of purpose and meaning during a time of isolation. Non-technology based interventions may have some practical advantages for those currently isolating at home since they are inexpensive and do not require extensive training.
(Edited publisher abstract)
Subject terms:
dementia, carers, social isolation, Covid-19, intervention, memory, quality of life, literature reviews;