Kritika Samsi

What do we know about quality of life in dementia? A review of the emerging evidence on the predictive and explanatory value of disease specific measures of health related quality of life in people with dementia.

Given its complexity, there is growing consensus on the need to measure patient‐rated broad outcomes like health‐related quality of life (HRQL) as well as discrete functions like cognition and behaviour in dementia. This review brings together current data on the distribution, determinants and course of HRQL in dementia to investigate the predictive and explanatory value of measures of HRQL in people with dementia.

Quality of life in dementia: a systematically conducted narrative review of dementia-specific measurement scales

Objectives: Ascertaining the quality of life (QoL) in people with dementia is important for evaluating service outcomes and cost-effectiveness. This paper identifies QoL measures for people with dementia and assesses their properties. Method: A systematic narrative review identified articles using dementia QoL measures. Electronic databases searched were AMED, CINAHL, EMBASE, Index to Theses, IBSS, MEDLINE, PsycINFO, Sociological Abstracts, and Web of Science. All available years and languages (if with an English language abstract) were included. Results: Searches yielded 6806 citations; 3043 were multiple duplicates (759 being true duplicates). Abstracts were read; 182 full papers were selected/obtained, of which 126 were included as relevant. Few measures were based on rigorous conceptual frameworks. Some referenced Lawtons model (Dementia Quality of Life [DQOL] and Quality of Life in Alzheimers Disease [QOL-AD]), though these tapped part of this only; others claimed relationship to a health-related QoL concept (e.g. DEMQOL), though had less social relevance; others were based on limited domains (e.g. activity, affect) or clinical opinions (Quality of Life in Late-Stage Dementia [QUALID]). Many measures were based on proxy assessments or observations of people with dementias QoL, rather than their own ratings. The Bath Assessment of Subjective Quality of Life in Dementia (BASQID) was developed involving people with dementia and caregivers, but excluded some of their main themes. All measures were tested on selective samples only (ranging from community to hospital clinics, or subsamples/waves of existing population surveys), in a few sites. Their general applicability remains unknown, and predictive validity remains largely untested. Conclusion: The lack of consensus on measuring QoL in dementia suggests a need for a broader, more rigorously tested QoL measure.

‘I live for today’: a qualitative study investigating older people’s attitudes to advance planning

This article reports investigation of prevalent understandings and systems of beliefs that underpin older people’s attitudes towards making plans for their future. The Mental Capacity Act 2005 (MCA) enables adults with capacity to make plans and decisions in advance, to arrange proxy decision-making and provides safeguards for those who might lose the capacity to make decisions for themselves in the future. This study explored the attitudes of a diverse sample of 37 self-declared well older people living in the community in England about their views on drawing up statements of wishes and documenting their decision-making preferences. The study was conducted in early 2009. Findings revealed that most individuals had a personal tendency or preference towards planning, guided by personality, beliefs, living situation and the relevancy of planning to their situation. Financial plans and funeral arrangements were most commonly drawn up with an absence of health and social care plans, which participants tended to postpone considering. Housing and residential care were important for all. Overall, few participants had heard of the MCA and most were unsure where to turn for support. Participants appreciated support when discussing these issues; some turned to family, while others felt professionals were a more appropriate source of advice. The family doctor was cited as trustworthy and a potential place to begin inquiries. Conceptualising onset of certain debilitating conditions also encouraged participants to think about planning for them. This study has implications for public education campaigns and health-related information that could potentially impact on many older people who are interested in making plans but are unaware that legal safeguards and practical support are available to aid this.This article reports investigation of prevalent understandings and systems of beliefs that underpin older peoples attitudes towards making plans for their future. The Mental Capacity Act 2005 (MCA) enables adults with capacity to make plans and decisions in advance, to arrange proxy decision-making and provides safeguards for those who might lose the capacity to make decisions for themselves in the future. This study explored the attitudes of a diverse sample of 37 self-declared well older people living in the community in England about their views on drawing up statements of wishes and documenting their decision-making preferences. The study was conducted in early 2009. Findings revealed that most individuals had a personal tendency or preference towards planning, guided by personality, beliefs, living situation and the relevancy of planning to their situation. Financial plans and funeral arrangements were most commonly drawn up with an absence of health and social care plans, which participants tended to postpone considering. Housing and residential care were important for all. Overall, few participants had heard of the MCA and most were unsure where to turn for support. Participants appreciated support when discussing these issues; some turned to family, while others felt professionals were a more appropriate source of advice. The family doctor was cited as trustworthy and a potential place to begin inquiries. Conceptualising onset of certain debilitating conditions also encouraged participants to think about planning for them. This study has implications for public education campaigns and health-related information that could potentially impact on many older people who are interested in making plans but are unaware that legal safeguards and practical support are available to aid this.

Real-Time Continuous Glucose Monitoring in Type 1 Diabetes: A Qualitative Framework Analysis of Patient Narratives

OBJECTIVE This study analyzed narratives about experiences of real-time continuous glucose monitoring (CGM) in people with type 1 diabetes. RESEARCH DESIGN AND METHODS People with type 1 diabetes using CGM and caregivers completed an online survey. Questions included duration of CGM, frequency of sensor wear, funding, and a free narrative about experiences or views about CGM. We used qualitative framework analysis to analyze 100 responses; 50% of participants were aged ≥18 years. RESULTS Most participants (87%) used CGM with insulin pump therapy, 71% used sensors ≥75% of the time, and 66% received funding for CGM from the National Health Service. Four themes were identified: 1) metabolic control, 2) living with CGM (work and school, sleep, exercise, nutrition, frequency of self-monitoring of blood glucose [SMBG]), 3) psychological issues and patient/caregiver attitudes, and 4) barriers to CGM use (technical issues, financial issues, attitudes of healthcare professionals toward CGM). Despite some hassles, experiences were overwhelmingly positive, with improved glycemic control, diet and exercise management, quality of life, and physical and psychological well-being, as well as reduced frequency of SMBG. Technical problems included sensor inaccuracy and unreliability, and “alarm fatigue.” The advantages of CGM used with an insulin pump with automatic suspension of insulin delivery during hypoglycemia were recorded by several participants, noting reduced hypoglycemia frequency and fear of nocturnal hypoglycemia. CONCLUSIONS Patient and caregiver narratives indicate that CGM is a valuable addition to diabetes care for many with type 1 diabetes.

‘Early days’: Knowledge and use of the Mental Capacity Act 2005 by care home managers and staff:

The Mental Capacity Act (MCA) was fully implemented in England and Wales in October 2007 and has relevance for the care home sector through its focus on decision-specific assessments of capacity. This article reports on research that forms part of a five year programme exploring evidence-based interventions in dementia and this article draws on part of the research that was designed to identify issues relating to implementation of the Act. Specific research questions for this study pertain to staff abilities to incorporate a new legal framework addressing mental capacity into care of people with dementia. Qualitative interviews with 32 staff in one group of care homes in Southern England demonstrated that, regardless of knowledge of MCA, the daily working ethos of staff appeared to be within the remit of Act. Training could therefore continue to build on these principles. However, considerable variation in understanding of terms and principles of the MCA was found. Few participants were aware of specific legislative points and offered ‘common sense’ explanations for their actions and decision-making. This level of knowledge may not meet regulators’ requirements or the needs of residents.

Negotiating a Labyrinth: experiences of assessment and diagnostic journey in cognitive impairment and dementia

There has been a global push towards the earlier diagnosis of dementia, but there is little understanding of the transitions along the assessment and diagnostic pathway from the perspective of people affected by memory problems, cognitive impairment and early dementia. This study explores the experience of the assessment and diagnostic pathway for people with cognitive impairment and their family carers.

Responding to the financial abuse of people with dementia: a qualitative study of safeguarding experiences in England.

BACKGROUND The risks of financial exploitation and abuse of people with dementia remain under-researched. Little is known of the views of those responsible for local adult safeguarding systems about prevention and redress. We explore current repertoires of responses of such persons and consider barriers and facilitators to minimizing risks of financial abuse for people with dementia. METHODS Fifteen qualitative interviews were undertaken with a purposively sampled group of Adult Safeguarding Co-ordinators in England in 2011. Framework analysis delineated themes in the transcripts; these were included in an iteratively developed coding framework. RESULTS Five themes were explored: (1) incidence of financial abuse; (2) impact of dementia on safeguarding responses; (3) warning signs of financial abuse, including neglect, unpaid bills, limited money for provisions; (4) encouraging preventive measures like direct debit to pay for bills, advance care plans, appointing Lasting Power of Attorney; and (5) barriers and facilitators in safeguarding, including the practice of financial agencies, cultural barriers, other systemic failures and facilitators. Not all systems of financial proxies are viewed as optimally effective but provisions of the Mental Capacity Act 2005 were welcomed and seen as workable. CONCLUSIONS Healthcare professionals may need to be more alert to the signs and risks of financial abuse in patients with dementia both at early and later stages. Engaging with safeguarding practitioners may facilitate prevention of abuse and effective response to those with substantial assets, but the monitoring of people with dementia needs to be sustained. In addition, professionals need to be alert to new risks from electronic crime. Researchers should consider including financial abuse in studies of elder abuse and neglect.

Dementia, dignity and quality of life: nursing practice and its dilemmas

AIMS The need for healthcare practitioners to respect the dignity of older people is widely recognised in England, where it has been given attention by politicians, professionals and health service regulators. This article aims to provide examples of how such ambitions may be used in practice development. METHODS This article reports the use of five vignettes discussed by dementia care practitioners that explored the areas of dementia diagnosis, lying, incontinence, behavioural and psychological distress, and end of life care. FINDINGS Each vignette promoted discussion of differences of perspectives about the ways to enhance the dignity of people with dementia in hospital, care home and community settings. The discussion confirmed that while dignity may be one quality indicator of good care potentially enhancing quality of life, it is not always straightforward. It may be more easily conceptualised when talking of physical care and treatment than other areas. CONCLUSION The opportunity to debate the subject and to discuss practice examples revealed differences of opinion and moral perspectives between practitioners about the use and relevance of the term dignity. These need to be acknowledged in any debates about objective and subjective definitions of quality of life.

Care pathways for dementia: current perspectives.

Uncertainty appears to typify the experience of living with dementia. With an uncertain illness trajectory and unpredictable levels of deterioration and stability in symptoms, people with a diagnosis of dementia may live with uncertainty and anxiety and find it hard to make plans or decisions for their future. People with memory problems and caregivers seeking a diagnosis of dementia may also potentially find themselves navigating a labyrinth-like maze of services, practitioners, assessments, and memory tests, with limited understanding of test scores and little information about what support is available. In this context of uncertainty, the apparent clarity and certainty of a “dementia care pathway” may be attractive. However, the term “dementia care pathway” has multiple and overlapping meanings, which can potentially give rise to further confusion if these are ill-defined or a false consensus is presumed. This review distinguishes four meanings: 1) a mechanism for the management and containment of uncertainty and confusion, useful for the professional as well as the person with dementia; 2) a manual for sequencing care activities; 3) a guide to consumers, indicating eligibility for care activities, or a guide to self-management for dementia dyads, indicating the appropriateness of care activities; and 4) a manual for “walking with” the person. Examples of these approaches are presented from UK dementia services with illustrations of existing care pathways and associated time points, specifically focusing on: 1) early symptom identification and first service encounters, 2) assessment process, 3) diagnostic disclosure, 4) postdiagnostic support, and 5) appropriate interventions. We review the evidence around these themes, as well as discuss service pathways and referral routes used by some services in England and internationally. We conclude that the attraction of the term “care pathway” is seductive, but caution is needed in taking shared understandings for granted.

Challenges and expectations of the Mental Capacity Act 2005: an interview-based study of community-based specialist nurses working in dementia care.

AIMS This study aimed to explore experiences of specialist community nurses providing information about the Mental Capacity Act and supporting people with dementia and carers. BACKGROUND The role of specialist community nurses and case managers, such as Admiral Nurses, suggests that providing information about the recent Mental Capacity Act (2005) in England and Wales would be appreciated by people with dementia and carers and would assist in assessment and support. DESIGN In-depth qualitative methodology was adopted to explore experiences and opinions of Admiral Nurses using the Mental Capacity Act. METHOD A volunteer sample of 15 Admiral Nurses were interviewed in 2008 about their experiences of explaining the legal framework to carers and people with dementia and expectations of the Act. Thematic analysis identified textual consistencies in the interviews. RESULTS Most participants reported positively about the Mental Capacity Act and considered it beneficial when working with people with dementia and carers. Specific themes included knowledge acquisition and training, alongside limited confidence with implementation; practice experiences in the community and the empowering nature of the Mental Capacity Act; practice expectations and challenges with implementation. CONCLUSION The Mental Capacity Act has potential for supporting the safeguarding and empowerment role of community nurses. However, not all participants felt confident using it and speculated this would improve with greater familiarity and use, which should be facilitated by refresher training and supervision. RELEVANCE TO CLINICAL PRACTICE The article concludes that nurses providing support to carers and of people with dementia may need greater familiarity about legal provisions. This may assist them in providing general information, making timely referrals to sources of specialist legal advice, and in using the Act to reduce anxiety, conflict and disputes.