Showing papers in "Dementia in 2011"

Steps to standardization and validation of hippocampal volumetry as a biomarker in clinical trials and diagnostic criterion for Alzheimer's disease

Abstract: Background The promise of Alzheimer’s disease biomarkers has led to their incorporation in new diagnostic criteria and in therapeutic trials; however, significant barriers exist to widespread use. Chief among these is the lack of internationally accepted standards for quantitative metrics. Hippocampal volumetry is the most widely studied quantitative magnetic resonance imaging measure in Alzheimer’s disease and thus represents the most rational target for an initial effort at standardization. Methods and Results The authors of this position paper propose a path toward this goal. The steps include the following: (1) Establish and empower an oversight board to manage and assess the effort, (2) adopt the standardized definition of anatomic hippocampal boundaries on magnetic resonance imaging arising from the European Alzheimer’s Disease Centers–Alzheimer’s Disease Neuroimaging Initiative hippocampal harmonization effort as a reference standard, (3) establish a scientifically appropriate, publicly available reference standard data set based on manual delineation of the hippocampus in an appropriate sample of subjects (Alzheimer’s Disease Neuroimaging Initiative), and (4) define minimum technical and prognostic performance metrics for validation of new measurement techniques using the reference standard data set as a benchmark. Conclusions Although manual delineation of the hippocampus is the best available reference standard, practical application of hippocampal volumetry will require automated methods. Our intent was to establish a mechanism for credentialing automated software applications to achieve internationally recognized accuracy and prognostic performance standards that lead to the systematic evaluation and then widespread acceptance and use of hippocampal volumetry. The standardization and assay validation process outlined for hippocampal volumetry was envisioned as a template that could be applied to other imaging biomarkers.

I’m still the same person: The impact of early-stage dementia on identity:

Abstract: Research suggests that the onset and progression of dementia may pose a threat to a person’s sense of identity. This qualitative study used Interpretative Phenomenological Analysis to explore parti...

Living through end-stage dementia: The experiences and expressed needs of family carers

Abstract: The focus of this paper is the experiences and needs of family carers of people with end-stage dementia. The project involved in-depth, qualitative interviews with 15 carers. The major themes emerging from the accounts of participants’ experiences were: getting support; having to trust others with care; managing the loneliness of being a carer; witnessing a loved one fade away; anticipating and experiencing death; and re-establishing life after the funeral. Carers expressed a range of instrumental and psychosocial needs. The study has provided a more personal account of the caring experience than much of the related literature. It has emphasized the need of carers for genuine understanding and connection — from family and friends as well as healthcare staff. The study highlights the amount of support carers can provide to each other through support groups and associated friendships, and stresses the importance of healthcare staff acknowledging and respecting this capacity of carers.

Accessibility in public space as perceived by people with Alzheimer's disease.

Abstract: Most people with dementia remain living at home as long as possible after being diagnosed, and hence their lives also include activities in the public space. The aim of this study was to illuminate ...

Preserving the ‘‘us identity’’ through marriage commitment while living with early-stage dementia

Abstract: Recognizing the impact of marriage commitment to living with early-stage dementia has important implications for developing proactive care for individuals with dementia and their families. This mix...

Using Photovoice with people with early-stage Alzheimer’s disease: A discussion of methodology:

Abstract: Many scholars and activists have challenged researchers to do research ‘with’ not ‘for’ or ‘on’ people with Alzheimer’s disease and related dementias. Photovoice is a relatively new qualitative met...

Self and embodiment: A bio-phenomenological approach to dementia

Abstract: Loss of self is widely regarded to be a consequence of dementia, and this perceived loss presents a variety of problems – not least because a clear understanding of the concept of self is elusive. This paper suggests a way to cut through problems that arise because we rely on conceptions of self in our understanding of the effects of dementia. It is proposed that we can avoid reliance on the concept of self through an approach based in bio-phenomenology. Such an approach would help us better understand the inner life of those with dementia and assist us to recognize that even in late stage dementia they are semiotic subjects with unique value.

What’s so big about the ‘little things’: A phenomenological inquiry into the meaning of spiritual care in dementia

Abstract: Although it is widely accepted that spirituality is an important aspect of health and healing in long term care, its meaning and day-to-day implications remain poorly understood. This study explored the meaning of spiritual care from the perspectives of patients living with moderate to severe dementia, their families and their care providers. Using a hermeneutic phenomenological approach, open-ended interviews were conducted in a dementia care unit with 29 participants, including patients, families, RNs, LPNs, and hospital chaplains. Interviewees were asked to share their stories and insights about spiritual care in dementia. Using hermeneutic analysis, the central theme of ‘little things’ was identified. Recognition and attendance to ‘little things’ promoted patients’ sense of personhood and connectedness to self and others. Barriers to spiritual care in dementia were also identified. These findings inform our understanding about effective relational approaches in spiritual care with this unique population.

Dementia timeline: Journeys, delays and decisions on the pathway to an early diagnosis

Abstract: Here we present the timeline for those who reach a memory assessment service based on research conducted with 31 people living with dementia and 49 carers in one area of the UK. The study develops the findings of earlier timeline work by illuminating other stages on the journey as events and decision points. Two key stages of delay are exposed. Firstly, the period from first thinking something may be amiss to the point of first talking to someone about it. Secondly, the period from first talking to someone, to first contact with a healthcare professional (HCP). A third period emerged where delays may occur once contact with the healthcare system is made. The mean journey time from thinking that something may be amiss to beginning the formal process of diagnosis was around three years. On average there is a gap of about a year between thinking something may be amiss and first talking to a friend or family member about the problem. Further, it typically takes just under two and a half years for a person to ...

How to evaluate quality of care from the perspective of people with dementia: An overview of the literature:

Abstract: This article reviews the literature on the inclusion of the perspective of people with dementia when evaluating quality of care. The few identified relevant studies suggest that there is consensus that people with mild to moderate dementia are able to talk about their experiences with care with clarity and insight. A minimum level of orientation to place, attention and language skills in the person with dementia are important for a successful subjective evaluation. On the basis of the relevant literature, we additionally formulated practical guidelines useful when one aims to collect information with interviewing, self-administered questionnaires, or focus groups from people with dementia to assess quality of care. In people with mild to moderate dementia, assessment of quality of care can best be done by individual interviewing and focus groups. Further research is needed to ascertain what people with dementia find important in relation to quality of care.

‘Oh he was forgettable’: Construction of self identity through use of communicative coping behaviors in the discourse of persons with cognitive impairment

Abstract: Communication involving persons with cognitive impairment (CI) associated memory issues requires particular attention in the clinical setting due to the sensitive and often difficult institutional work that must take place between the patient and his or her physician. An individual with CI is often tested for memory issues during the office visit, generating a potentially face-threatening situation. Said individual may attempt to preserve positive identity or ‘save face’ (Gumperz, 1982) by using communicative coping behaviors (CCBs). This study characterizes the use of CCBs (e.g., accounts and humor) by persons with CI in clinical interviews and provides important insight on how to improve doctor—patient communication involving people with CI. In order to describe and compare CCBs used by persons with cognitive impairment, and those used by cognitively normal individuals, verbatim, in-office transcripts from both groups were analyzed. Results showed that participants with CI used more memory accounts than...

Existential loss as a determinant to well-being in the dementia caregiving dyad: A conceptual model:

Abstract: The following describes a conceptual model for dementia caregiving. The interdisciplinary model proposes that a caregiver’s confrontation with existential loss plays a determining role in the well-...

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

Abstract: 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 ...

Expectations and experience of moving to a care home: Perceptions of older people with dementia

Abstract: Large numbers of people with dementia live in care homes. Decisions about permanent care are usually made by family members and professionals with little involvement from people with dementia. This...

Managing dementia agitation in residential aged care

Abstract: Agitation is a widespread and challenging problem among aged care residents with dementia. This article draws on empirical and theoretical literature to propose a model for preventing and treating agitation non-pharmacologically. A literature review finds agreed, coherent definition and measurement of agitation to be absent despite numerous agitation remedies having been suggested, yet sufficient material to support evidence-based care planning. Agitation is revealed as resulting from a resident’s interactions with the environment or their internal state, giving rise to unmet needs that attentive care can treat. Agitation treatments are reviewed to find no single effective remedy and a lack of quality evaluation. A higher-order, problem-solving approach is proposed. The described system consists of sequential diagnosis, decision making and treatment options, commencing with individualized and institutional preventative measures removing environmental triggers, followed by individual remediation, with resi...

Sliding interactions: An ethnography about how persons with dementia interact in housing with care for the elderly

Abstract: This ethnography describes how persons with dementia interact with cognitively intact persons in housing with care for the elderly. The results, drawing upon 31 observation sessions and nine interv ...

‘That’s me, the Goother’: Evaluation of a program for individuals with early-onset dementia

Abstract: We conducted face-to-face, semi-structured interviews with six white men with early-onset dementia (EOD) and supplemented the interviews with a focus group with six wives of the men to document per...

The organisation of dementia care by families in Malta: The experiences of family caregivers

Abstract: This paper discusses the experiences of dementia family caregivers in Malta. The study design was essentially exploratory as this is the first funded social research on dementia in the island of Malta. In-depth semi-structured interviews were conducted in October 2008 with 17 caregivers. Identification of caregivers was through their relatives’ attendance at a hospital based outpatient memory clinic. Interviews were recorded, transcribed and when required, phrases were translated from Maltese to English. A thematic analysis was guided by the questions; What are the experiences of family caregiving in Malta? And what impact does caregiving have for individual/family life? Three key findings are discussed, namely: the organization of family care in Malta; the use of formal services; and the dislocation of dementia caregiving experiences from wider community life. This paper raises questions about support mechanisms currently available in Malta while presenting cross-national learning opportunities to apply ...

How family carers view hospital discharge planning for the older person with a dementia

Abstract: This study reports on the experiences of 25 family carers of the hospital discharge planning process for their family member with a dementia. Analysis of the data indicates that the needs of family carers were not always addressed in the hospital discharge process and that discharge planning and execution is in need of improvement.

Interaction in community-based aged healthcare: Perceptions of people with dementia:

Abstract: This research sought to understand how people with dementia perceive interaction in the context of their service experience. Using the client data from a qualitative study that was conducted over three years and employed both inductive and deductive techniques, the data from 22 client interviews were consolidated and then analysed. Seven themes related to service experience were identified: Awareness; Communication; Dependency; Expectations; Experience; Position; and Relationship. These themes provide insights that could assist service providers to better understand and facilitate interaction with their clients. The study highlights that clients with dementia wish to be given the opportunity to have input to the creation of their service. Itpoints out that service organizations need to develop tailored mechanisms that will allow this to occur; and the study provides information that could be used to facilitate the achievement of a responsive, client-centred community-based aged healthcare service.

Finding the key to communion - Caregivers’ experience of ‘music therapeutic caregiving’ in dementia care: A qualitative analysis:

Abstract: ‘Music therapeutic caregiving’ (MTC), when caregivers sing for or together with persons with dementia (PWDs) during caring situations, has been suggested as a way to reduce PWDs’ behavioral and psy ...

Exploring positioning in Alzheimer Disease through analyses of family talk

Abstract: The ways in which people with dementia are positioned through talk has received considerable attention, but to date there has been little exploration of such positioning in everyday family life. Given the importance of family in caring for persons with dementia, it is critical that we understand, first, how family members position themselves and each other as they negotiate changes associated with dementia and, second, the implications of that process, both for individual members and for the family as a unit. In this study, two complementary approaches were used to explore positioning in the family of a woman with dementia. The first used interviewing to reveal how family members positioned themselves and each other in their conscious reflections about dementia. The second, drawing on conversation analysis, highlighted how they positioned themselves and each other in their everyday conversations together. Implications for the study of dementia in the family are discussed.

Proverbs and formulaic sequences in the language of elderly people with dementia

Abstract: Some types of formulaic (routine and familiar) language seem to remain fairly intact in people with language and memory disturbances, making it a useful tool for both testing language skills and supporting language retention and use. Proverbs can reasonably be considered a subset of formulaic language, and while it is known that the ability to understand proverbs is compromised in dementia, completing them ought to be relatively easy, if proverbs are stored holistically like other kinds of formulaic language. However, this study reports how three people with dementia often struggled to complete proverbs in a game used in a day-care centre to stimulate the memory and language skills. By examining their responses and relating them to the causes of formulaic language patterns, it is argued that these games are not as appropriate a tool for stimulating memory and language skills as might be first thought. Although they do provide a much-needed opportunity for sustained patient-carer interaction that transcends the basic delivery of physical care needs, the games contravene some of the guidelines offered by Orange (2001) regarding the best way to support people with Alzheimer’s Disease in constructive interaction.

A psycho-educational intervention focused on communication for caregivers of a family member in the early stage of Alzheimer’s disease: Results of an experimental study

Abstract: A psycho-educational intervention focused on communication was conceived for caregivers of family members in the early stage of Alzheimer’s disease (i.e., persons with dementia), and tested on five...

Spiritual nurturance and support for nursing home residents with dementia

Abstract: This mixed method study examined nursing home resident, family and staff views regarding spiritual nurturance and support for persons with dementia and analyzed institutional resources/approaches for meeting residents’ spiritual needs. For residents able to communicate in words (n = 47/83 or 57%), this topic evoked a range of emotional content, brought back memories, and yielded information about what mattered to them spiritually/religiously. Some observations and reported behaviors of residents unable to be interviewed directly (n = 36/83 or 43%) suggested emotional awareness of spiritual activities. Family member/staff perspectives revealed beliefs, concerns, and needs for support/training in the provision of spiritual care. Quantitative findings were consistent and identified differences between surveyed nursing homes (n = 48) with and without religious affiliations. Discussion of personhood, spiritual/ religious coping, and meeting spiritual care needs led to conclusions about the role of professional...

The needs of people with learning disabilities who develop dementia: A literature review:

Abstract: People with learning disabilities are living longer and are increasingly developing age related conditions including dementia. If this occurs, their medical and social needs pose many challenges fo...

An autoethnography on shifting relationships between a daughter, her mother and Alzheimer’s dementia (in any order)

Abstract: This is an autoethnography written by a daughter whose mother developed Alzheimer’s dementia a few years ago. In the writing, a shifting nature of relationships is described between the daughter, h...

Government, professional and public efforts in Japan to change the designation of dementia (chihō)

Abstract: In 2004, the label for dementia was officially changed in Japan as part of a publicity campaign to raise public awareness about dementia and replace the previously stigmatizing word ‘chihō’, which ...