Patients' and carers' experiences of UK memory services

Hailey, Emma; Hodge, Sophie; Burns, Alistair; Orrell, Martin

doi:10.1002/gps.4380

Cited by 8 publications

(9 citation statements)

References 11 publications

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“…19 Approximately a third of UK services are accredited, 20 and we focused on these as they represent current UK best practice. 19 Approximately a third of UK services are accredited, 20 and we focused on these as they represent current UK best practice.…”

Section: Surveysmentioning

confidence: 99%

“…In 2009, the UK Royal College of Psychiatrists established the Memory Services National Accreditation Programme (MSNAP). 19 Approximately a third of UK services are accredited, 20 and we focused on these as they represent current UK best practice. We developed a survey based on a literature review and the NICE and EAPC guidelines, 13,14 delivered through the programme Opinio.…”

Section: Surveysmentioning

confidence: 99%

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The role of the memory service in helping carers to prepare for end of life: A mixed methods study

Moore

Goodison

Sampson

2018

Int J Geriat Psychiatry

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Objectives The objective of the study is to explore current practice and the role taken by UK memory services in helping carers of people with dementia prepare for the end of life. Methods We used mixed methods including a survey (48 responses/51% response rate) and semistructured interviews (n = 12) with clinicians working in UK memory services accredited by the Memory Services National Accreditation Programme. We used descriptive statistics to report survey findings and thematically analysed interview and survey qualitative data. Results Surveys: services routinely discussed with carers the progressive nature of dementia (89%), legal arrangements (health: 72%; finances: 74%), advance care planning (63%), and implications of loss of capacity (61%). Fewer services routinely discussed the terminal nature of dementia (41%) and meaning of death (11%) with carers. Most (89%) agreed that these conversations were in line with their role. Interview findings corresponded with survey findings. Themes included diagnosis considered too early to discuss end of life, discussions being inconsistent with a “living well” approach, people with dementia being resistant to conversations, and discussions of spirituality crossing professional boundaries. Services' capacity for follow‐up with carers impacted on ability to broach these topics. Conclusions More in‐depth and distressing topics such as end of life and advance care planning require longer follow‐up to establish relationships to broach difficult topics. Variability in follow‐up practices between services created inequity in the extent to which memory services could address these topics. More research is required to investigate the best method for broaching these topics with carers and the person with mild dementia within different health care contexts.

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Section: Surveysmentioning

confidence: 99%

Section: Surveysmentioning

confidence: 99%

The role of the memory service in helping carers to prepare for end of life: A mixed methods study

Moore

Goodison

Sampson

2018

Int J Geriat Psychiatry

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“…[12][13][14][15][16] The aims of this study were: to describe the change in health related quality of life (HRQL) over the first 6 months after first referral to MAS; to assess whether patient characteristics, including diagnosis, are associated with changes in HRQL; and to determine if use of antidementia drugs and non-pharmacological post-diagnostic therapies are associated with improved HRQL among those patients diagnosed with dementia.…”

Section: Introductionmentioning

confidence: 99%

Sociodemographic Characteristics, Cognitive Function, and Health-related Quality of Life of Patients Referred to Memory Assessment Services in England

Park

Smith

Neuburger

et al. 2017

Alzheimer Disease &Amp; Associated Disorders

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Despite strong support for the provision of memory assessment services (MASs) in England and other countries, their effectiveness in improving patient outcomes is uncertain. We aimed to describe change in patients' health related quality of life (HRQL) six months after referral to MASs and to examine associations with patient characteristics and use of postdiagnostic interventions.Data from 883 patients referred to 69 MASs and their informal caregivers (n=569) were collected at referral and 6 months later. Multivariable linear regression was used to examine associations of change in HRQL (DEMQOL, DEMQOL-Proxy) with patient characteristics (age, sex, ethnicity, socioeconomic deprivation and comorbidity) and use of post-diagnostic interventions (anti-dementia medications and non-pharmacological therapies).Mean HRQL improved, irrespective of diagnosis: self-reported HRQL increased 3.4 points (95% CI 2.7 to 4.1), proxy-reported HRQL 1.3 points (95% CI 0.5 to 2.1). HRQL change was not associated with any of the patient characteristics studied. Patients with dementia (54%) receiving anti-dementia drugs reported greater improvement in their HRQL but those using non-pharmacological therapies reported less improvement than those not.HRQL improves in the first 6 months after referral to MASs. Research is needed to determine longer-term sustainability of the benefits and the cost-effectiveness of MASs.

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“…Previous studies exploring the experiences of patients and their family members in an MC report that they initially felt stressed and unnerved and that they often did not know what to expect of their visit to the clinic (Mastwyk et al, 2016). However, in both qualitative and quantitative studies, the overall experience were found to be more positive than negative, and patients and family members were often satisfied with the diagnostic process (Cahill et al, 2008;Foreman et al, 2004;Hailey et al, 2016;Hodge et al, 2013;Park et al, 2018).…”

Section: Introductionmentioning

confidence: 99%

Neuropsychological assessment and diagnostic disclosure at a memory clinic: A qualitative study of the experiences of patients and their family members

Gruters

Christie

Ramakers

et al. 2020

The Clinical Neuropsychologist

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Objective: The aim of this study was to gain insight into the experiences of patients and their family members regarding a neuropsychological assessment (NPA) and the diagnostic disclosure given by the medical specialist (psychiatrist, geriatrician, or their residents) at the memory clinic (MC). Method: Patients with and without a cognitive impairment and their family members were recruited from three Dutch MCs. Four focus groups with 14 patients and 13 family members were analyzed using both inductive and deductive content analysis. Results: Three themes were identified: uncertainty, early diagnostic paradox, and knowledge utilization. High levels of uncertainty were experienced throughout the NPA and diagnostic disclosure. The early diagnostic paradox refers to the coexistence of negative emotions, feeling distressed due to undergoing an NPA that made them aware of their cognitive complaints, and the experience of relief due to insight given by the outcome of the NPA and medical diagnosis. Knowledge utilization refers to a low retention of medical information. Conclusion: Clinicians can reduce uncertainty by using clear communication, limiting interruptions during an NPA, and paying attention to contextual factors. Low information retention could possibly be improved by involving a family member and using visual aids or written information during the diagnostic disclosure. Finally, participants also appreciated being provided with neuropsychological feedback on the strengths and weaknesses of their cognitive profiles and with guidance on how to manage this diagnosis in their daily lives.

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Patients' and carers' experiences of UK memory services

Cited by 8 publications

References 11 publications

The role of the memory service in helping carers to prepare for end of life: A mixed methods study

The role of the memory service in helping carers to prepare for end of life: A mixed methods study

Sociodemographic Characteristics, Cognitive Function, and Health-related Quality of Life of Patients Referred to Memory Assessment Services in England

Neuropsychological assessment and diagnostic disclosure at a memory clinic: A qualitative study of the experiences of patients and their family members

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