“There’s a Catch-22”. The complexities of pain management for people with advanced dementia nearing the end of life: a qualitative exploration of physicians’ perspectives

Background: Pain management is a cornerstone of palliative care. The clinical issues encountered by physicians when managing pain in patients dying with advanced dementia, and how these may impact on prescribing and treatment, are unknown. Aim: To explore physicians’ experiences of pain management for patients nearing the end of life, the impact of these on prescribing and treatment approaches, and the methods employed to overcome these challenges. Design: Qualitative, semi-structured interview study exploring: barriers to and facilitators of pain management, prescribing and treatment decisions, and training needs. Thematic analysis was used to elicit key themes. Settings/Participants: Twenty-three physicians, responsible for treating patients with advanced dementia approaching the end of life, were recruited from primary care (n=9), psychiatry (n=7) and hospice care (n=7). Results: Six themes emerged: diagnosing pain, complex prescribing and treatment approaches, side-effects and adverse events, route of administration, importance of sharing knowledge and training needs. Knowledge exchange was often practised through liaison with physicians from other specialties. Cross-specialty mentoring, and the creation of knowledge networks were believed to improve pain management in this patient population. Conclusions: Pain management in end-stage dementia is complex, requiring cross-population of knowledge between palliative care specialists and non-specialists, in addition to collateral information provided by other health professionals and patients’ families. Regular, cost- and time-effective mentoring and ongoing professional development are perceived to be essential in empowering physicians to meet clinical challenges in this area.

Mental Health and Morbidity of Caregivers and Co-Residents of individuals with Dementia: A Quasi-Experimental Design

Objectives: To determine if providing informal care to a co-resident with dementia symptoms places an additional risk on the likelihood of poor mental health or mortality compared to co-resident non-caregivers.
Design: A quasi-experimental design of caregiving and non-caregiving co-residents of individuals with dementia symptoms, providing a natural comparator for the additive effects of caregiving on top of living with an individual with dementia symptoms. 
Methods: Census records, providing information on household structure, intensity of caregiving, presence of dementia symptoms and self-reported mental health, were linked to mortality records over the following 33 months. Multi-level regression models were constructed to determine the risk of poor mental health and death in co-resident caregivers of individuals with dementia symptoms compared to co-resident non-caregivers, adjusting for the clustering of individuals within households.
Results: The cohort consisted of 10,982 co-residents (55.1% caregivers), with 12.1% of non-caregivers reporting poor mental health compared to 8.4% of intense caregivers (>20 hours of care per week). During follow-up the cohort experienced 560 deaths (245 to caregivers). Overall, caregiving co-residents were at no greater risk of poor mental health but had lower mortality risk than non-caregiving co-residents (ORadj=0.93, 95% CI 0.79, 1.10 and ORadj=0.67, 95% CI 0.56, 0.81, respectively); this lower mortality risk was also seen amongst the most intensive caregivers (ORadj=0.65, 95% CI 0.53, 0.79).
Conclusion: Caregiving poses no additional risk to mental health over and above the risk associated with merely living with someone with dementia, and is associated with a lower mortality risk compared to non-caregiving co-residents.

Statin withdrawal in people with dementia

Background: There are approximately 24 million people worldwide with dementia; this is likely to increase to 81 million by 2040. Dementia is a progressive condition, and usually leads to death eight to ten years after first symptoms. End-of-life care should emphasise treatments that optimise quality of life and physicians should minimise unnecessary or non-beneficial interventions. Statins are 3-hydroxy-3-methylglutaryl coenzyme A (HMG-CoA) reductase inhibitors; they have become the cornerstone of pharmacotherapy for the management of hypercholesterolaemia but their ability to provide benefit is unclear in the last weeks or months of life. Withdrawal of statins may improve quality of life in people with advanced dementia, as they will not be subjected to unnecessary polypharmacy or side effects. However, they may help to prevent further vascular events in people of advanced age who are at high risk of such events.

Objectives: To evaluate the effects of withdrawal or continuation of statins in people with dementia on: cognitive outcomes, adverse events, behavioural and functional outcomes, mortality, quality of life, vascular morbidity, and healthcare costs.

Search methods: We searched ALOIS (medicine.ox.ac.uk/alois/), the Cochrane Dementia and Cognitive Improvement Group Specialised Register on 11 February 2016. We also ran additional searches in MEDLINE, EMBASE, PsycINFO, CINAHL, Clinical.Trials.gov and the WHO Portal/ICTRP on 11 February 2016, to ensure that the searches were as comprehensive and as up-to-date as possible.

Selection criteria: We included all randomised, controlled clinical trials with either a placebo or 'no treatment' control group. We applied no language restrictions.

Data collection and analysis: Two review authors independently assessed whether potentially relevant studies met the inclusion criteria, using standard methodological procedures expected by Cochrane. We found no studies suitable for inclusion therefore analysed no data.

Main results: The search strategy identified 28 unique references, all of which were excluded.

Authors' conclusions: We found no evidence to enable us to make an informed decision about statin withdrawal in dementia. Randomised controlled studies need to be conducted to assess cognitive and other effects of statins in participants with dementia, especially when the disease is advanced.

Palliative Care for People with Dementia: a Literature Review

With growing numbers of people dying with, and from, dementia there is a need for professionals and health-care organisations to review the access to and provision of palliative care. This literature review has identified several key themes in relation to the person dying with dementia including: diagnosis of the dying phase, appropriate timing of referral to specialist palliative care services; ethical decisions in relation to medication and nutrition; the environment; under treatment especially, for pain relief; over and burdensome treatment interventions; carer involvement; collaborative working and advance decision making.

An Action Research Study Engaging in the Use of Storyboarding as Research-based Approach to Teaching to Identify Issues Faced when Working with People with Dementia from Minority Ethnic Communities

The common view that research informs teaching assumes a linear approach whereby teaching is considered an output of research. This paper reports the findings of an action research project that identified the issues and challenges faced by those working across health and social care when working with people with dementia from minority ethnic communities. It explored the research-teaching nexus by using an approach to teaching that was research-based as opposed to research-led. A storyboarding technique was used which involved identifying and dissecting real life experiences for discussion. The realisation that each story was unique to the individual demonstrated the benefits and importance of education and training for applying a person-centred approach to dementia care. This project also revealed the benefits of actively engaging course participants with research moving them from being recipients of research, to research- active. Such a process not only encouraged their intrinsic motivations but, also, critical thinking and reflective practice to support deep learning. Such findings demonstrate the benefits of linking teaching with research.

I Must Do the Post - Using Poetry for Raising Dementia Awareness

This paper reviews the use of a poem written by a care assistant as part of a dementia awareness course. the author of the poem went on to use the poem to help staff within the care home gain an insight and to promote reflection and discussion about caring for the person living with dementia as part of a training programme. an evaluation of its use was a also undertaken and staff reported that this poem was thought provoking, insightful and had helped them to reflect on how they work with people living with dementia.

The Impact of Dementia on Women Internationally: an Integrative Review

Women are disproportionately affected by dementia, both in terms of developing dementia and becoming caregivers. We conducted an integrative review of English language literature of the issues affecting women in relation to dementia from an international perspective. The majority of relevant studies were conducted in high income countries, and none were from low-income countries. The effects of caregiving on health, wellbeing and finances are greater for women; issues facing women, particularly in low and middle-income countries need to be better understood. Research should focus on building resilience to help people adjust and cope long term.

Healthcare Staffs’ Experiences and Perceptions of Caring for People with Dementia in the Acute Setting: Qualitative Evidence Synthesis

Background Dementia is a global issue, with increasing prevalence rates impacting on health services internationally. People with dementia are frequently admitted to hospital, an environment that may not be suited to their needs. While many initiatives have been developed to improve their care in the acute setting, there is a lack of cohesive understanding of how staff experience and perceive the care they give to people with dementia in the acute setting. Objectives The aim of this qualitative synthesis was to explore health care staffs’ experiences and perceptions of caring for people with dementia in the acute setting. Qualitative synthesis can bring together isolated findings in a meaningful way that can inform policy development. Settings A screening process, using inclusion/exclusion criteria, identified qualitative studies that focused on health care staff caring for people with dementia in acute settings. Participants Twelve reports of nine studies were included for synthesis. Data extraction was conducted on each report by two researchers. Methods Framework synthesis was employed using VIPS framework, using Values, Individualised, Perspective and Social and psychological as concepts to guide synthesis. The VIPS framework has previously been used for exploring approaches to caring for people with dementia. Quality appraisal was conducted using Critical Appraisal Skills Programme (CASP) and NVivo facilitated sensitivity analysis to ensure confidence in the findings. Results Key themes, derived from VIPS, included a number of specific subthemes that examined: infrastructure and care pathways, person-centred approaches to care, how the person interacts with their environment and other patients, and family involvement in care decisions. The synthesis identified barriers to appropriate care for the person with dementia. These include ineffective pathways of care, unsuitable environments, inadequate resources and staffing levels and lack of emphasis on education and training for staff caring for people with dementia. Conclusions This review has identified key issues in the care of people with dementia in the acute setting: improving pathways of care, creating suitable environments, addressing resources and staffing levels and placing emphasis on the education for staff caring for people with dementia. Recommendations are made for practice consideration, policy development and future research. Leadership is required to instil the values needed to care for this client group in an effective and personcentred way. Qualitative evidence synthesis can inform policy and in this case, recommends VIPS as a suitable framework for guiding decisions around care for people with dementia in acute settings.

Montreal Cognitive Assessment (MoCA): validation study for vascular dementia

The Montreal Cognitive Assessment (MoCA) is a brief instrument developed for the screening of milder forms of cognitive impairment, having surpassed the well-known limitations of the MMSE. The aim of the present study was to validate the MoCA as well as its short version, which was proposed by the NINDS-CSN VCI Harmonization Standards for screening Vascular Dementia (VaD) patients. The results, based on a homogeneous sample of 34 VaD patients, indicate that the MoCA is a psychometrically valid and reliable instrument for cognitive screening in VaD patients, showing excellent discriminant validity. Both the full and short versions of the MoCA had excellent diagnostic accuracy in discriminating VaD patients, exhibiting an area under curve (AUC) higher than the MMSE [AUC(MoCA full version) = .950; 95% IC = .868-.988; AUC(MoCA short version) = .936; 95% IC = .849-.981; AUC(MMSE) = .860; 95% IC = .754-.932]. With a cutoff below 17 on the MoCA full version and 8 on the short version, the results for sensitivity, specificity, positive and negative predictive values, and classification accuracy were superior compared to the MMSE. In conclusion, both versions of the MoCA are valid, reliable, sensitive and accurate screening instruments for VaD patients.

FTIR, a potential tool to dementia diagnosis trough analysis of plasma

Nowadays it is still difficult to perform an early and accurate diagnosis of dementia, therefore many research focus on the finding of new dementia biomarkers that can aid in that purpose. So scientists try to find a noninvasive, rapid, and relatively inexpensive procedures for early diagnosis purpose. Several studies demonstrated that the utilization of spectroscopic techniques, such as Fourier Transform Infrared Spectroscopy (FTIR) and Raman spectroscopy could be an useful and accurate procedure to diagnose dementia. As several biochemical mechanisms related to neurodegeneration and dementia can lead to changes in plasma components and others peripheral body fluids, blood-based samples and spectroscopic analyses can be used as a more simple and less invasive technique. This work is intended to confirm some of the hypotheses of previous studies in which FTIR was used in the study of plasma samples of possible patient with AD and respective controls and verify the reproducibility of this spectroscopic technique in the analysis of such samples. Through the spectroscopic analysis combined with multivariate analysis it is possible to discriminate controls and demented samples and identify key spectroscopic differences between these two groups of samples which allows the identification of metabolites altered in this disease. It can be concluded that there are three spectral regions, 3500-2700 cm -1, 1800-1400 cm-1 and 1200-900 cm-1 where it can be extracted relevant spectroscopic information. In the first region, the main conclusion that is possible to take is that there is an unbalance between the content of saturated and unsaturated lipids. In the 1800-1400 cm-1 region it is possible to see the presence of protein aggregates and the change in protein conformation for highly stable parallel β-sheet. The last region showed the presence of products of lipid peroxidation related to impairment of membranes, and nucleic acids oxidative damage. FTIR technique and the information gathered in this work can be used in the construction of classification models that may be used for the diagnosis of cognitive dysfunction.

‘Old and ill’ : death anxiety and coping strategies influencing health professionals' well-being and dementia care

Personality of the caregiver influences the use of strategies to deal with the behavior of persons with dementia

Personality of family caregiver is an important factor influencing the caregiver's burden, depression and distress. We now hypothesized that the personality is associated with specific strategies used by family caregivers to deal with the behavioral and psychological symptoms of demented relatives (BPSD). Participants were 98 consecutive persons with dementia and their family caregivers. Assessments included: Personality (NEO-FFI), Burden (ZBI), Depression (CES-D), Cognitive Function (MMSE), BPSD (NPI), Distress (NPI-D), and an open question to identify the strategies used by caregivers when faced with BPSD. Caregivers used different strategies to cope with their relatives' behavior: avoiding conflict; confronting; reassuring; orienting; responding coercively; distracting; colluding; medicating and restricting the movements. Extraversion was the only dimension of caregiver's personality that determined the use of caregiver strategies to deal with BPSD. Extroverted caregivers used the "confronting" strategy less often. Caregiver's personality should be taken into account when designing adapted intervention programs.