Dementia recent issues

Editorial: End of life care in dementia: Building bridges for effective multidisciplinary care

Sampson, E. L., Robinson, L. — 2009-06-29

Palliative and end of life care of dementia at home is feasible and rewarding: Results from the `Hope for Home' study

Treloar, A., Crugel, M., Adamis, D. — 2009-06-29

Even though palliative care of dementia and care at home are key NHS priorities, services that set out specifically to support palliative care of dementia at home are virtually non-existent. We studied a novel service that has supported many people with advanced dementia at home through till death. Key factors for success include the right equipment, expertise around relevant medication, food, and social care needs, as well as understanding and support for funding care commissioning and informal care. The study revealed blockages to accessing support as a result of poor understanding of the needs of advanced dementia care as well as organizational prejudice. We demonstrate that good, home based palliative care of dementia can be achieved with very positive outcomes. Bereavement may be helped by the process of caring at home till death. Given that the Audit Commission has cited home care of advanced dementia as good value for money, it is of grave concern that services to support people with advanced dementia at home are not available.

The Dementia End of Life Care Project (DeLCaP): Supporting families caring for people with late stage dementia at home

Ghiotti, C. — 2009-06-29

This article describes the development of a locally based project funded by the BigLottery for 5 years from May 2008 to support five families at any one time caring for a relative with late stage dementia at home. The outcomes centre on improving the well-being of both the person with dementia and their caregivers. The assumption is that the principles of palliative care that have so sensitized the end of life care for people with cancer can be applied to improve the lot of people with dementia and their caregivers. Development of the project therefore entailed bringing together staff across dementia care, palliative care practitioners and crucial generalist community staff, such as GP's and District Nurses. A team with representation from these various professionals and care staff is now up and running to pilot a cross cutting service to meet the particular needs of people with late stage dementia and their families. The funding from the lottery includes additional respite care, training and consultancy. The project is small enough to enable experimentation and the design of a pathway to effectively utilize the knowledge and skills of the different practitioners involved. The scale of the project makes it possible to show how we can transcend the current underdevelopment and fragmentation of community services and help families who wish to do so, to care for their relatives at home.

Improving end of life care for the person with dementia: A practical approach from general practice

Evans, G. — 2009-06-29

Drawing on the experience of looking after 50 patients with dementia, this paper describes a practical approach by one GP to making a difference for people with dementia in care homes especially at the end of life. Included is the use of advance care plans and enhanced annual reviews drawing on GSF prognostic indicator guidance. Using case studies, the following topics are discussed: pain assessment, end of life care, emergency situations, hospital admission avoidance, swallowing difficulties, acute agitation and cardiopulmonary arrest. The forms and protocols which have been developed to support decision making in these situations, along with details of the website on which they can be found, are discussed. The potential benefits of significant event meetings and a GP practice to care home alignment model are also outlined.

Improving the care of people with dementia at the end of life: The role of hospice and the US experience

Shega, J., Tozer, C. — 2009-06-29

The number of persons diagnosed with and dying from dementia continues to climb. Research corroborate that persons dying from dementia receive poor end of life care including the use of procedures or tests with little or no benefit, un- or undertreated physical and psychological symptoms, and futile care. This is in contrast to the patient's perspective on quality end of life care — adequate pain and symptom management, avoidance of prolongation of dying, achieve a sense of control, relieve burden, and strengthening relationships with loved ones. Hospice, initially developed to improve the end of life care for persons dying from cancer, represents an existing care model that can bridge these differences in experiences and wishes. Expansion of hospice services for persons dying from dementia may be limited by a number of obstacles that require consideration such as difficulties with prognosis, misconceptions by providers and families about the dying process in dementia, reimbursement issues, and regulatory oversight. However, a thoughtful and proactive approach can overcome these barriers, support hospice utilization, and bring about a more humane death for dementia patients and their families.

Let someone else decide?: Development of an advance care planning service for nursing home residents with advanced dementia

Meller, A. E., Caplan, G. A. — 2009-06-29

This paper outlines the development of an advance care planning service, in partnership with general practitioners, specialists and facility staff that supports Nursing Home (NH) residents with dementia and their families. The aim of the service is to put a process in place whereby treatment options for residents, who have lost decision-making ability, can be considered in advance of any further episodes of illness. A 10 step plan was developed to implement Advance Care Planning within high level residential aged care facilities. Issues that arose during the course of the project are also discussed. The legal context for substitute decision-making is explained. Issues such as when to have these conversations, how to approach families, are discussed

Relief of Suffering with Dementia Units: Innovations in care -- the Israeli Perspective

Aminoff, B. Z. — 2009-06-29

This paper proposes a new, alternative approach and setting for end-stage dementia patients with Aminoff Suffering Syndrome (ASS) that could pertain to the Israeli setting and could possibly also be acceptable in other countries. Short hospitalization periods of approximately 1 month and treatment in Relief of Suffering End-of-Life with Dementia Units may be a new palliative approach and present a possible solution for coping with the horrendous burden of the suffering of dementia patients, their families, and the medical and nursing staff. Aminoff Suffering Syndrome (ASS) in advanced dementia is the proposed symptomatology and pathological entity that is characterized by a high Mini Suffering State Examination (MSSE) scale score, <6 months survival, irreversible and intractable aggravation of suffering and medical condition until demise.

Editorial: End of life care in dementia: Research needed urgently to determine the acceptability and effectiveness of innovative approaches

Robinson, L., Sampson, E. L. — 2009-06-29

Although two thirds of people with dementia live in the community, a recent report from the Alzheimer's Society concluded that current health and social care systems are failing to support people with dementia and their families to continue to live at home, despite the fact that family carers of people with dementia save the UK over £10 million a year (Alzheimer's Society, 2007). If there are few examples of innovative care packages within dementia care, research evaluating such new approaches is even more limited (Robinson et al., 2005; Sampson et al., 2006). This section of the Dementia journal contains some examples of projects which have the potential to improve end of life care for people with dementia and their families.

Advance Care Planning: An opportunity for person-centred care for people living with dementia

Exley, C., Bamford, C., Hughes, J., Robinson, L. — 2009-06-29

Many people want to be able to plan ahead, so that if in the future they cannot make decisions or do things, their wishes will be known. This is called Advance Care Planning (ACP). Although it is part of official NHS policy (NHS End of Life Care Planning), ACP is hardly ever done, and it may become more difficult once a person has memory problems. In the UK, there is very little research into ACP. By the time someone has signs of dementia, families often become involved. We are uncertain how this affects ACP and the views of the person with dementia, particularly with the new Mental Capacity Act which allow families to comment on health, as well as financial, issues. Our study will be exploring the area of ACP, especially in dementia, by

• looking at the experience of other countries through a systematic review of the existing literature;

• finding out what people who have carried out ACP in this country think through interviews and focus groups;

• considering what factors might help professionals to encourage the process of ACP in practice; and

• looking at how ACP might be done better for people with dementia.

The ultimate aim of our study is to produce guidance on ACP for both people with dementia, their families and health care professionals.

Changing practice in dementia care for people in care homes towards the end of life

Evans, C., Goodman, C. — 2009-06-29

This paper reports on the background and design of an innovative study seeking to develop and test a dementia specific approach to palliative care for older people in care homes, entitled Evidence-based interventions in dementia towards the end of life (EVIDEM EoL). The study uses a two-phase prospective design. Phase I intends to explore and document characteristics and support needs for people with dementia in care homes towards the end of life. Data from phase I informs phase II, the development and testing of a dementia specific education and support tool for palliative care in care homes. This paper reports on the study's background and phase I design. The study is part of the EVIDEM research programme (Evidence-based Interventions in Dementia) (www.evidem.org.uk).

Specialist community-based End of Life Dementia Care Nurse

Dutton, R. — 2009-06-29

The first 50 patients: A brief report on the initial findings from the Palliative Care in Dementia Project

Scott, S., Pace, V. — 2009-06-29

The St. Christopher's Hospice Palliative Care in Dementia Project, funded for 3 years by the King's Fund, aims to investigate the palliative care needs of patients with advanced dementia and their families; to clarify the role of specialist palliative care for this patient group; and to examine the usefulness of one model of working. This interim report outlines findings from the first 50 patients taken on by the project. Early results indicate that both patients and their carers have a high level of unmet need. The model of care chosen for this project appears to meet many of these needs, and appears to be both cost efficient and effective in terms of improving end of life care for dementia patients and their carers.

Book review: Speaking of Dying: A Practical Guide to Using Counselling Skills in Palliative Care, by Louis Heyse-Moore. London: Jessica Kingsley, 2009. 191 pp., ISBN: 978 1 84310 678 4. {pound}17.99 (pbk)

Kukkastenvehma, R. — 2009-06-29

Existential phenomenology and the quality of life of carers and care recipients: A case study

Sabat, S. R. — 2009-04-22

The evaluation of spiritual care in a dementia care setting

Goodall, M. A. — 2009-04-22

Spiritual care has become an integral part of the care package offered to older people who move to residential care. However, spirituality is a word that can mean everything or nothing and as such becomes difficult to define. Assessment of `spiritual care' becomes a real challenge, because it raises important questions. These are as follows: the nature of spiritual care; how it is offered; and who takes responsibility for it. This is especially true in dementia care homes where residents cannot normally take part in evaluation. This paper offers a model of evaluation of spiritual care by using reflection, relationship and restoration, and through observing the virtues described in the Biblical concept of `fruit of the spirit'.

Guiding design of dementia friendly environments in residential care settings: Considering the living experiences

Davis, S., Byers, S., Nay, R., Koch, S. — 2009-04-22

In the past twenty years, the importance of the physical and social environments in supporting the person with dementia has gained a much higher profile in dementia care. Despite efforts to move aged care away from the medical model to a more balanced social model of care, we still struggle with the dominance of an institutional context which impedes individuality and choice. This article argues that the experience of the person with dementia should frame the perspective brought to built design and the philosophy of care — in essence, `looking out from the inside'. Shifting the emphasis from condition to experience encourages the culture change needed to create environments that allow the person with dementia to be an active participant in everyday life rather than a passive recipient of care. Based on the development of a resource for residential and respite facilities in Australia, seven living experiences are identified: the presentation of self-experience, eating experience, personal enjoyment experience, bedroom experience, family and community connections experience, end-of-life experience and the staff experience. Each is discussed to show how consideration of the living experiences provides a way to focus thinking for design of the built environment to practically support the person with dementia, thereby addressing the wider spectrum of issues in creating a dementia friendly physical and social environment from the perspective of the person with dementia.

Where does risk feature in community care practice with older people with dementia who live alone?

Waugh, F. — 2009-04-22

Aiming to provide insight into a growing area of aged care services this article reports on five practitioners' perspectives of what were the key elements of their practice in community care for older persons with dementia who live alone. It draws on the findings from the first of two research projects undertaken collaboratively with Mercy Community Care (MCC), a non-profit community care agency, in Sydney, Australia and the University of Sydney in 2003 and 2006. The first project was a pilot qualitative research study focusing on practices of staff who were involved in the Dementia Monitoring Program (DMP), a specialist service for older persons living alone with dementia. Reducing risk is a major consideration driving policy development in community care of people with dementia in Australia. Using this preliminary research as a case study, this article explores the complexity and multi-dimensional nature of community care practices of these workers with older people who lived alone with dementia. The notion that `risk' is the all consuming focus of workers' intervention is challenged in this paper. While reducing risk and increasing the safety of their service users were important elements of these workers' intervention, addressing service users' needs and upholding their human rights remained paramount in workers' intervention with their service users.

How well do family caregivers know their relatives' care values and preferences?

Whitlatch, C. J., Piiparinen, R., Friss Feinberg, L. — 2009-04-22

Purpose: This study examines the psychometric properties of the Values and Preferences Scale (VPS) and compares the responses of 267 persons with cognitive impairment with the responses of their family caregivers to determine the accuracy of the caregivers' perceptions of their relatives' care values and preferences.

Design and Methods: Exploratory factor analyses examined whether a consistent factor structure could be found for the VPS for both persons with cognitive impairment (PWCIs) and family caregivers. Analyses also determined whether family caregivers were accurate in their perceptions of their relative's care preferences.

Results: Results indicated that the VPS was best divided into four factors or subscales (i.e., Burden, Safety/Quality of Care, Autonomy, and Social Interactions) all of which were found to have adequate internal consistency for persons with cognitive impairment and family caregivers. Caregivers generally had a good sense of what preferences were most important to their relatives (i.e., issues of safety and quality of care), but often underestimated the importance of certain values and preferences.

Implications: These findings support previous work suggesting that practitioners consider incorporating an assessment of values and preferences for everyday care when working with persons with cognitive impairment and their family caregivers. Further application and testing of the Values and Preferences Scale should prove useful to practitioners who assist cognitively impaired persons and their caregivers with health care decision making and planning.

Growing and gaining through caring for a loved one with dementia

Netto, N. R., Jenny, G. Y. N., Philip, Y. L. K. — 2009-04-22

Aim: To investigate the gains experienced by family caregivers of persons with dementia.

Methods: Twelve respondents were recruited using purposive sampling from three institutions around Singapore. A qualitative design, guided by the grounded theory approach, was adopted and involved semi-structured, in-depth, face-to-face interviews. The interviews were recorded, transcribed and analyzed using open, axial and selective coding.

Results: All caregivers interviewed reported having gained from caregiving. The most common gain was that of `personal growth' which comprised being more patient/understanding, becoming stronger/more resilient, having increased self-awareness and being more knowledgeable. Another theme that emerged was `gains in relationships' whereby caregivers experienced an improvement in their relationship with the care recipient, with others in the family or in their ability to interact with other older persons. The third gain experienced was that of `higher-level gains' which encompassed gains in spirituality, deepened relations with God, and a more enlightened perspective in life.

Discussion: This research supports a shift from the conventional focus on burdens to a more holistic approach that considers how caregivers can grow and emerge stronger from the caregiving experience. This has implications in the design and delivery of services as utilizing these gains as a coping resource may enable better support for caregivers. It is pertinent that professionals supporting caregivers internalize the perspective of gains so that it becomes a natural way of seeing their clients and in the process help caregivers find meaning and enrichment in their caregiving journey.

Living on the threshold: The spatial experience of living alone with dementia

De Witt, L., Ploeg, J., Black, M. — 2009-04-22

The purpose of this qualitative study was to understand the meaning of living alone for older people with dementia. Fourteen audio-taped open-ended interviews were conducted with eight such older women in Ontario, Canada. The data were analyzed using an adaptation of van Manen's method. Heidegger's philosophy informed interpretation of the findings through the theme living on the threshold. The study findings deepen understanding of `space' and `place' in the experience of living alone with dementia. Participants sought the middle-ground of dialectical tensions within the threshold space and shared insights about their spatial experience of: (a) being here, (b) being there, (c) being out, and (d) keeping out. These older women risked losing their threshold space when admitting to mistakes as their illness progressed. The authors conclude with examples of how this spatial interpretation may inform and improve communication with and care of older people in similar circumstances.

Supportive living environments: A first concept of a dwelling designed for older adults with dementia

Van Hoof, J., Kort, H. S.M. — 2009-04-22

The vast majority of older adults want to remain living independently at home, with or without a sufficient amount of professional home care, even when overall health is starting to decline. The ageing of society and the increase in the number of very old elders goes together with an increase in the number of people with dementia. About two thirds of the diagnosed people in the Netherlands live at home. Dementia has severe implications to the quality of daily life, in particular to independent functioning. This sets extra demands to living environments. Older adults with dementia and their partners ask for living environments that support independence, compensate for declining vitality, and lower the burden of family care. For this purpose, a first concept of a design for a dementia dwelling is presented in this paper, which incorporates modifications in terms of architecture, interior design, the indoor environment, and technological solutions. These design features were derived from literature search and focus group sessions. Current design guidelines are frequently based on practical experience only, and therefore, more systematic field research should be carried out to find evidence for the various design modifications. Also, it needs to be studied how the design features of the dementia dwelling can be incorporated into the existing housing stock.

Feasibility of using standardized patient methodology to develop and assess research assistant competence in dementia research

2009-04-22

Use of standardized patients in training research staff has been limited. This study evaluated its feasibility. An expert panel created six scenarios using standardized patients to portray dyads of dementia patients/caregivers, plus instructions for actors. Three research assistants trained in administering the Hamilton Depression Rating Scale portion of the Structured Interview for the Clinical Assessment of Depression in Dementia administered it to each dyad. An expert panel member telemonitored each session and scored pairs using the same instrument. Sessions were videotaped, watched and scored by research assistants. Their scores were compared with expert ratings, and deviation scores were calculated, with mean item deviation scores compared using analysis of variance. Interclass correlations and analysis of variance revealed no differences between research-assistant ratings and their ratings compared with a standard, supporting the feasibility of using standardized patients to train research assistants to perform complex clinical assessments.

Book reviews and educational resources: The Art of Dementia Care, by Daniel Kuhn and Jane Verity. Clifton Park, NY: Thomson Delmar Learning, 2008, pp. 123 (including a 10-page introduction). ISBN 10: 1--4018--9951-X; ISBN 13: 978--1-4018--9951--6

Kydd, A. — 2009-04-22

Book reviews and educational resources: Tom Kitwood on Dementia: A Reader and Critical Commentary, by Clive Baldwin and Andrea Capstick (Eds.). Maidenhead: McGraw Hill/Open University Press, 2007, 352 pp. ISBN-10: 0--335--222741--4 (pb); 0--335--222742--2 (hb)

Taylor, L. — 2009-04-22

Editorial: Family matters

Keady, J., Harris, P. P. B. — 2009-01-28

Love song at the end of the day: A wife's journey

Weyl, M. — 2009-01-28

Information pathways into dementia care services: Family carers have their say

Robinson, A., Elder, J., Emden, C., Lea, E., Turner, P., Vickers, J. — 2009-01-28

This research described family carers' experiences in accessing dementia information and services in Southern Tasmania, Australia. Focus groups were conducted around three topics: (i) information available to family carers prior to a formal diagnosis of dementia, (ii) sources of information following diagnosis, and (iii) means of transfer of information. Data analysis identified themes reflecting participants' progressive care experiences: from hurtful and dismissive attitudes towards initial requests for information and early diagnosis, to futile searching for information within a seemingly disorganized healthcare system, to eventual resolution of a kind whereby dementia services were finally procured for family members to varying degrees — all of which created emotional turmoil and delayed receipt of services. This study strongly emphasises the value of health professionals seriously and empathically hearing and acting upon family carers' requests for information and prompt diagnosis of dementia. In addition, there is a significant need to improve access and organization of information and services for people with dementia and their family carers.

Persistence of self in individuals with Alzheimer's disease: Evidence from language and visual recognition

Fazio, S., Mitchell, D. B. — 2009-01-28

The persistence of self in individuals with probable Alzheimer's disease was investigated via language and visual self-recognition. Seventy-eight adults (ages 66—103) participated: 26 with mild cognitive impairments, 26 with moderate cognitive impairments, and 26 without impairment. Although frequency of language usage (during an interview) declined across impairment levels, there were no significant differences in either rates or proportions of pronoun and attribute usage. When asked to identify themselves in photographs taken with an instant camera, cognitively impaired individuals — in spite of forgetting the photographic session only minutes earlier — exhibited unimpaired self-recognition, a dissociation consistent with a preserved self. Taken together, these findings indicate a persistence of self in individuals with dementia, and have implications for how Alzheimer's is characterized and experienced, and how individuals are cared for.

Frontotemporal dementia (FTD) patients living at home and their spousal caregivers compared with institutionalized FTD patients and their spousal caregivers: Which characteristics are associated with in-home care?

2009-01-28

Patients with frontotemporal dementia (FTD) need complete care in the final stages of the disease. Some informal caregivers continue the in-home care whereas others institutionalize. This study identifies differences between in-home FTD patients and their caregivers (FTDH) and institutionalized FTD patients (FTDN) and their caregivers. Twelve in-home and 24 institutionalized FTD patients in the final stages of the disease, and their spousal caregivers, were observed. Neuropsychiatric function disorders, dementia duration and severity, burden, mental and physical health, quality of the current and premorbid relationship and caregiver motivation were analysed. The majority of FTDH patients had dementia of shorter duration and showed residual independence. In FTDH patients, neuropsychiatric symptoms were more often present whereas apathy and disinhibition were more intense in FTDN patients. FTDH caregivers felt more emotionally burdened but had better mental health. Caregiver motivations were similarly present in FTDH and FTDN caregivers, while the love-motivated caregivers had worse physical and mental health. Our data suggest that all FTD caregivers could benefit from psychological support. Motivation for caregiving has intervention potential.

Sense of coherence amongst male caregivers in dementia: A South African perspective

Pretorius, C., Walker, S., Heyns, P. M. — 2009-01-28

The aim of this study was to explore the experiences of men caring for spouses suffering from dementia from a salutogenic perspective. The study focused on the experiences of ten men caring for a spouse with dementia. Primarily qualitative analysing methods were utilized. Data were obtained from semi-structured interviews conducted with male spouses of patients with dementia. An orientational analysis approach was followed and the data was analysed in terms of Antonovsky's sense of coherence construct. Qualitative findings were compared to participant responses to quantitative measures. Stressors most often reported were cognitive impairment, behaviour problems, a lack of free-time, erosion of the relationship, family conflict and financial concerns. Factors facilitating caregiver coping included support from their daughters, their ability to find meaning and satisfaction within the context of the care-giving task, and the successful utilization of active, problem-focused coping strategies. Men generally appear to be effective and capable caregivers. However, their approach to care giving differs from that of their female peers. Task-oriented problem-solving, effective use of the available support resources and the ability to find both meaning and satisfaction in their caring appear characteristic of effective male caregivers of demented spouses.

African American caregivers: An exploration of pathways and barriers to a diagnosis of Alzheimer's disease for a family member with dementia

Hughes, T., Tyler, K., Danner, D., Carter, A. — 2009-01-28

Despite the significance of an early diagnosis of Alzheimer's disease (AD), African Americans are diagnosed in later stages of the disease and present with greater cognitive impairment at the time of diagnosis when compared to Euro-Americans. To this end, there exists a paucity of research on diagnostic pathways among African Americans with dementia. More specifically, few studies have explored help-seeking pathways from the initial manifestation of symptoms until an actual diagnosis of Alzheimer's disease was received from the perspective of African American caregivers. Thus, the present study examined the retrospective experiences of 17 African American caregivers who were given a diagnosis of Alzheimer's disease for a family member with dementia. Participants completed face-to-face semi-structured interviews. Study findings revealed a complex interplay between the patient with dementia, entities that comprise their social support network, and clinicians.

Caring for individuals with end-stage dementia at the end of life: A specific focus on hospice social workers

Sanders, S., Swails, P. — 2009-01-28

Little is known about the beliefs and practices of social workers who work with individuals with end-stage dementia. With more individuals reaching the end stages of the disease, it is crucial to determine how professionals view their work with end-stage dementia patients and their caregivers. During this ethnographic study, the beliefs and practices about dementia care of 13 hospice social workers from the United States were documented for 10 months through interviews, in-field observations, and chart reviews. It was determined that although hospice social workers use a wealth of practice skills with individuals with end-stage dementia and their caregivers and strive to enhance the personhood of the patients, they also possess a neutral to negative view of practice with this population and see their role as limited and ambiguous compared to how they view their work with cognitively intact patients. This study has implications for how hospice social workers and other healthcare professionals provide end-of-life care for patients and families who are dealing with dementia and the types of training that should be implemented in hospice agencies to strengthen end-stage dementia care.

Innovative practice

Moriarty, J. — 2009-01-28

Improving services and support for people with dementia: Using a web forum to capture the views of people with dementia and their carers to inform a national audit office report

Ahmad, S. — 2009-01-28

Improving outcomes for dementia care in acute aged care: Impact of an education programme

Mcphail, C., Traynor, V., Wikstrom, D., Brown, M., Quinn, C. — 2009-01-28

Person-centred home care for people with dementia: Developing a specialist service in an ethnically diverse community

Snayde, F., Moriarty, J. — 2009-01-28

Book review: Dementia Care Training Manual for Staff Working in Nursing and Residential Setting, by Danny Walsh. London: Jessica Kingsley, 2006, pp. 240. ISBN 1--8431--03184

Brown, M. — 2009-01-28

Book review: Diagnostic Issues in Dementia: Advancing the Research Agenda for DSM-V, by Trey Sunderland et al. (Eds.). Arlington, VA: American Psychiatric Association, 2007, pp. 165

Jackson, G. A. — 2009-01-28

Editorial: Hearing the voices in the policy--practice--research nexus: The importance of the knowledge exchange process for people with dementia

Wilkinson, H., Weaks, D. — 2008-11-12

General practice-based intervention for suspecting and detecting dementia in France: A cluster randomized controlled trial1

2008-11-12

The study evaluated the impact of a general practice-based intervention on 3021 patients in France aged 75 years and above with spontaneous memory complaints. The objective was to identify evocative signs of Alzheimer's disease through a cluster randomized controlled trial. The study involved 681 general practitioners (GPs), randomly selected and assigned to an intervention (n = 352) or a control group (n = 329), and 214 specialists. The intervention group participated in training sessions relating to dementia diagnosis and the use of brief neuropsychological tests suited to general practice. The control group dispensed usual general practitioner care. The primary outcome was suspicion of dementia by GPs. The secondary outcome was accurate detection of dementia by the GPs. Most patients (96%) were already followed by the GPs (mean follow-up duration 10.8 years, similar in both groups). Suspicion of dementia was two-fold higher for GPs in the intervention group (adjusted OR = 1.99, p < 0.0001). Probability of suspected dementia increased with patient age and decreased with educational level. However the positive predictive value was not significantly different between the two groups (60.9% vs. 64.4%, p = 0.41). GPs from the intervention group also had a higher probability (adjusted OR = 2.24, p = 0.01) of correctly detecting demented patients (intervention did not increase the number of diagnosed cases of dementia, but increased the number of suspected cases that were later confirmed by specialists). The study showed that information on dementia and application of simple psychometric tests could improve the precision of a GP's diagnosis without changing the efficacy of detection of dementia.

Forgetting and the memory of forgetting: The material and symbolic role of memory in the intersubjective lives of people with AIDS dementia

Kelly, A. — 2008-11-12

In death-driven narratives of AIDS, phenomenological losses experienced as a result of changes to memory with AIDS dementia remain uncharted. Traditionally in the field of dementia, memory has been viewed as a neurological skill to be measured and charted, categorized into short-term or long-term memory loss. In this article, a relationship-based approach to memory is taken where memory is understood to play an important material and symbolic role in the lives of people with AIDS dementia and their relationships with significant others. Through ethnographic description, this article details how for two informants — Diane and Andrew — forgetting and the memory of forgetting was central to how they made sense of who they were in relationship to others and others in relationship to them. For them, memory was more than an individual cerebral activity. Memory, and loss of memory, was instrumental to intersubjective life and formed part of a social space of living loss, characterized by liminality.

A systematic review of the use of contingent valuation in Alzheimer's disease research

Oremus, M., Tarride, J.-E. — 2008-11-12

This systematic review was conducted to examine the use of an economic evaluation strategy called `contingent valuation' in Alzheimer's disease (AD). Several scholarly and internet databases were searched for relevant citations. Articles were included in the review if they contained an original report of the use of contingent valuation in AD. Six articles — all of which assessed contingent valuation defined as willingness-to-pay (WTP) — met this criterion. Overall, caregivers' and patients' WTP for medications was higher when outcomes were better (e.g. cure versus stability). Cost-benefit analyses in two articles indicated that cholinesterase inhibitors, caregiver training, diagnostic testing, and publicly funded AD research would have net benefits for society. The articles were difficult to compare because of differences in methodology and setting. The articles also had a mix of methodological problems pertaining to study population, survey design, and elicitation of WTP. WTP is a useful means of conducting socioeconomic and policy research in AD, provided researchers are careful to address potential problems with comparability and methodology.

The meaning of everyday technology as experienced by people with dementia who live alone

Nygard, L. — 2008-11-12

This study explored how people with dementia who live alone experienced the meaning of their everyday technology, such as telephones and electronic equipment, and the use of it. Eight participants with mild to moderate stage dementia were included. Repeated interviews and observations were undertaken in each participant's home and surroundings. A phenomenological, interpretative method was adopted in the analysis. In summary, the participants experienced their everyday technology to be embedded with both practical and existential meaning, as it could assist them in different ways in daily life as well as support their perception and presentation of themselves. Although important, habit and familiarity did not seem to provide them with enough support to continue using technology, unless the technology was experienced as very significant and incorporated in a bodily experience through continuous and very frequent practice. The abundance of experienced meanings and the significance of the technology in the participants' lives call for further studies in order to better understand the conditions for managing everyday technology in home and society and, when relevant, to facilitate technology use in people with dementia.

Telephone-delivered psychosocial intervention reduces burden in dementia caregivers

Tremont, G., Duncan Davis, J., Bishop, D. S., Fortinsky, R. H. — 2008-11-12

The objective of this study was to examine the preliminary efficacy of Family Intervention: Telephone Tracking — Dementia (FITT-D), a multi-component intervention that is delivered in 23 telephone contacts over 12 months. Thirty-three dementia caregivers were randomly assigned to receive either FITT-D ( n = 16) or standard care (n = 17) using urn randomization to balance the groups on dementia severity, caregiver gender and relationship type (spouse versus other). Inclusion criteria included formal dementia diagnosis, caregiving for at least six months, residing with the care recipient, and providing at least four hours of direct supervision per day. Master's-level therapists contacted caregivers by telephone over 12 months. Each contact followed a standardized treatment manual, involving assessment and individualized application of interventions to address mood, family functioning, social support and health. Outcomes included Zarit Burden Interview, Revised Memory and Behavior Problem Checklist, and the Geriatric Depression Scale at baseline and 12 months (end of treatment). Caregivers receiving FITT-D exhibited significantly lower burden scores and less severe reactions to memory and behavior problems than caregivers in the standard care condition. Findings provide preliminary evidence for the efficacy of FITT-D, a potentially highly accessible, low-cost intervention for dementia caregivers.

The intentionality of insight: The meanings given to insight in the lived experiences of AIDS dementia

Kelly, A. — 2008-11-12

Rather than duplicating biomedical research measuring insight, or suggesting models by which one could more reliably measure a person with dementia's insight, I turn to the notion of insight reflexively. Based on ethnographic research with four `intimate circles of care', I explore the consciousness of people with AIDS dementia's insight, the intentionality of insight in the phenomenological sense. Since insight is a capacity of all humans, I also include in my unit of analysis the meanings of insight for significant others. With intentionality, what matters most are the meanings made of and the positions taken towards insight. I do not address what we understand philosophically as knowledge or question the definitions of awareness or insight. I focus on the ethnographic description of the meanings and positions that informants had of insight. Intentionality is not necessarily truth or fact, but rather a position taken. From the meanings and positions taken by informants, four themes of the intentionality of insight emerged: insight as heart-wrenching; agency, control and purpose; the hope of losing insight; and insight as life-giving. Intentionality of insight emerged in relation to intimacy, emotions and relationships. Insight was experienced within and narrated through a liminal state.

Lay and professional expectations of cholinesterase inhibitor treatment in the early stage of Alzheimer's disease

Andersen, E., Silvius, J., Slaughter, S., Dalziel, W., Drummond, N. — 2008-11-12

The objectives of the study were to identify, compare and contrast the expectations of key stakeholders regarding cholinesterase inhibitor treatments prescribed to people with Alzheimer's Disease (AD), and to examine those expectations in the light of recent findings regarding the efficacy and effectiveness of this class of drug. Participants were four older women diagnosed with early stage AD, their lay caregivers, their professional healthcare providers, and pharmacists and policy makers, making a total of 23 participants. Semi-structured interviews were performed in a conversational style designed to elicit accounts of expectations of cholinesterase inhibitors in relation to diagnosis and treatment for AD. The interviews were carried out in the participants' own homes, their places of work or by telephone. A five-member, multidisciplinary team taped, transcribed and coded the interviews using qualitative software in order to identify overarching themes.

The study found that although the policy makers and physicians harbored more skeptical or negative expectations, the majority of stakeholders expected that people diagnosed with AD would reap beneficial effects through the use of cholinesterase inhibitors. The study concludes that there is still controversy about the use of cholinesterase inhibitors, particularly in terms of their cost-effectiveness. A clear and ethical argument exists in support of attempts to both modify unrealistic patient expectations where they exist, and to enhance the knowledge base of prescribers. Greater concordance between physicians', patients' and caregivers' treatment goals, and appropriate prescription of these agents in line with available research will require more complete patient and caregiver information on the one hand, and potentially a shift in emphasis to more individualized, clinically focused outcomes, on the other.

Book review and educational resource: Partnerships in Community Mental Health Nursing and Dementia Care: Practice Perspectives, by John Keady, Charlotte L Clark and Sean Page (Eds.). New York: Open University Press, 2007. 344 pp. ISBN 10--0--335--21581, {pound}24.99 (pbk)

Boyd, R. — 2008-11-12

Book review and educational resource: Alzheimer's from the Inside Out, by Richard Taylor. Baltimore, MD: Health Professions Press, 2007. 255 pp. ISBN 1--932529--23--3, {pound}13.95 (pbk)

Keady, J. — 2008-11-12

Book review and educational resource: Design for Nature in Dementia Care, Bradford Dementia Group Good Practice Guide, by Garuth Chalfont. London: Jessica Kingsley, 2008. 180 pp. ISBN 978--1--84310--571--8, {pound}19.99 (pbk)

Dewing, J. — 2008-11-12