Clinical nurse specialist's role in young-onset dementia care.

Post-diagnostic care in young-onset dementia (YoD) varies, from something that is occasionally structured, to improvised, to frequently non-existent depending on geographic region. In a few regions in England, a nurse designated to helping families may exist. This study aimed to describe this seldom-observed nursing role and its content. It used an investigative qualitative case study design based on the analysis of two YoD clinical nurse specialists (CNSs) describing the work they did in providing post-diagnostic care to YoD service users. The CNSs address various areas affected by mid-life dementia, including patients' mental health, caregiver stress and families' psycho-social problems. They use various approaches in delivering care, including making home visits, acting as a personal contact for service users and liaising with other health and social care services. Desirable attributes of a CNS service include service users having access to the same CNS throughout their care, receiving timely care and experiencing longer-term support and reassurance. In the post-diagnostic period, service user needs are often more psycho-social than medical, and the CNS role can complement and add value to clinical appointments. The role allows service users to be managed in the community, to receive information, guidance and advice and can prevent and de-escalate problems.

Measuring younger onset dementia: What the qualitative literature reveals about the 'lived experience' for patients and caregivers.

BACKGROUND: The qualitative research on young onset dementia is providing insights about the 'lived experience' of patients and caregivers. However, findings from these studies have seldom been integrated into descriptive overviews. Our aim was to search the qualitative research, to integrate the qualitative findings, and offer an account of the lived experience for patients and caregivers. METHOD: The search of the qualitative research formed part of a broader comprehensive literature search investigating salient measurement issues in the young onset dementia psychosocial research. Five electronic databases were searched (Medline, CINAHL, PsycINFO, Embase, the Cochrane Library) plus supplementary searching of reference sections and use of online search engines. We identified 23 qualitative articles. RESULTS: In the pre-diagnostic period, patients experience changes in cognition and functioning but may be uncertain about changes and their significance. Caregivers may observe changes, think of explanations, and are important in instigating medical intervention. Obtaining a diagnosis may be a demanding process and the possibility of dementia may not be anticipated. In the post-diagnostic period, patients and caregivers use several strategies to cope and adjust. Patients can withdraw from established responsibilities while caregivers assume compensatory roles/duties. Patients perceive changes in their identity while caregivers perceive changes in the caregiver-patient relationship. Both can experience grief, isolation, and stigma. DISCUSSION: The diagnosis of dementia elicits significant changes in thinking, emotion, and lifestyle that patients and caregivers are unlikely to be ready for. Both receive insufficient support or guidance in particular of a psychological nature on how to cope and adjust.

Imaging Care Requirements: Use of Functional Neuroimaging to Predict Dementia Caregiver Burden.

BACKGROUND: Dementia caregivers frequently report high stress, with increased burden associated with worse outcomes for both patients and caregivers. Although many studies relate clinical phenotypes to burden, the relationship between imaging pathology and burden, irrespective of diagnosis, is unknown. This study investigated the relationship between caregiver burden and patient regional cerebral blood flow in dementia. METHODS: Seventy-sev en patients with cognitive impairment undergoing brain perfusion single-photon emission computed tomography imaging in normal clinical care and their caregivers were recruited. Caregiver burden was ranked from "little" to "severe" using the Zarit Burden Interview and perfusion values extracted from the patient images for predefined regions of interest. The associations between burden score and regional function on imaging were tested. RESULTS: Burden score was significantly higher for caregivers of patients with abnormal perfusion compared to those with normal perfusion in the left and right frontal, right parietal, and right temporal lobes. No difference in burden was found in the left parietal or temporal groups. Correlations showed that a higher caregiver burden was associated with lower patient perfusion scores in the same regions. CONCLUSION: Caregiver burden is strongly related to the extent of frontal or right-predominant parietal or temporal lobe dysfunction. Regional abnormality on perfusion imaging can be used to facilitate identification of individuals who are likely to create a high burden on caregivers.

Understanding important issues in young-onset dementia care: the perspective of healthcare professionals.

AIM: Psychosocial research on the lived experiences of young-onset dementia patients and caregivers has identified salient issues about their care, however, views on care from the perspective of young-onset dementia healthcare professionals is less well known. The aim of this study was to investigate and identify important issues in young-onset dementia care provision from a healthcare provider perspective. METHODS: The design was an exploratory qualitative interview study. In-depth semistructured interviews were conducted with healthcare professionals with clinical expertise in young-onset dementia drawn from medicine, nursing and allied health. Thematic analysis was applied to interview transcripts to identify themes representing important underlying issues in care across the dementia clinical pathway (i.e., prediagnosis, diagnosis and postdiagnosis). RESULTS: In prediagnosis, it is important for healthcare professionals to recognize symptoms as organic and degenerative and more than psychological, and to refer patients to an appropriate clinical facility for assessment. During diagnosis, it may be challenging to determine dementia, and methods are employed to manage diagnostic uncertainty. Following diagnosis, optimizing routine clinical care is important and can include the provision of practical informational guidance, empathic concern and psychoeducational support. Meeting service-user requirements in the community is an important aspect of care, and may be facilitated by the involvement of clinical nurse specialists. CONCLUSION: The findings are presented as a paradigm for holistic young-onset dementia care. The paradigm offers a framework for contemplating and evaluating the criteria and quality of young-onset dementia care.

Markers of assimilation of problematic experiences in dementia within the LivDem project.

This study aimed to determine whether the Markers of Assimilation of Problematic Experiences in Dementia scale (MAPED) can be used to identify whether the way in which participants talk about dementia changed during the group. All eight sessions of a LivDem group, which were attended by participants were recorded and transcribed. An initial analysis identified 160 extracts, which were then rated using the MAPED system. Inter-rater reliability was 61% and following a resolution meeting, 35 extracts were discarded, leaving 125 extracts with an agreed marker code. All of the participants were identified as producing a speech marker relating to dementia, and these varied between 0 (warding off) to 6 (problem solution). Examples of these markers are provided. The proportion of emergence markers (indicating the initial stages of assimilation) compared to later markers changed significantly between the first four sessions and the final sessions. This difference was still significant even when the markers produced by the most verbal participant, Graham, were excluded. The use of process measures within psychotherapy complements more conventional outcome measures and has both theoretical and clinical implications.

Spiritual belief, social support, physical functioning and depression among older people in Bulgaria and Romania.

OBJECTIVES: An exploratory investigation is reported into the role of spirituality and religious practice in protecting against depression among older people living in rural villages in Bulgaria and Romania, two neighbouring countries with similar cultural, political and religious histories, but with differing levels of current religiosity. METHODS: In both countries, interviews were conducted with samples of 160 persons of 60 years and over in villages of similar socio-economic status. The Hospital Anxiety and Depression-D scale and the Royal Free Interview for Religious and Spiritual Beliefs were used to assess depression and spiritual belief and practice respectively. In addition social support, physical functioning and the presence of chronic diseases were assessed. One year later, follow-up interviews were conducted with 58 of the original sample in Bulgaria, in which additional measures of depression and of spiritual belief and practice were also included. RESULTS: The study demonstrates, as expected, significantly lower levels of spiritual belief in the Bulgarian sample (Bulgarian mean 29.7 (SD = 19.1), Romanian mean 47.6 (SD = 11.2), t = 10.2, p < 0.001), as well as significantly higher levels of depression (Bulgarian mean 12.0 (SD = 4.9), Romanian mean 7.3 (SD = 4.1), t = 9.3, p < 0.001), the latter attributable in large part to higher morbidity and disability rates, but less evidently to differences in strength of belief. However, analyses from both the cross-sectional study and the one-year follow-up of the Bulgarian sample do suggest that spiritual belief and practice may both influence and reflect physical and mental illness. CONCLUSIONS: Much of Eastern Europe displays high rates of depression among its older population and provides opportunities for investigation of the role of religious belief and practice in preventing and coping with depression. Further research is encouraged in populations of diverse religiosity.

Haven't we met before? The effect of facial familiarity on repetition priming.

Within the word recognition literature, word-frequency and hence familiarity has been shown to affect the degree of repetition priming. The current paper reports two experiments which examine whether familiarity also affects the degree of repetition priming for faces. The results of Experiment 1 confirmed that familiarity did moderate the degree of priming in a face recognition task. Low familiarity faces were primed to a significantly greater degree than high familiarity faces in terms of accuracy, speed, and efficiency of processing. Experiment 2 replicated these results but additionally, demonstrated that familiarity moderates priming for name recognition as well as face recognition. These results can be accommodated within both a structural account of repetition priming (Burton, Bruce & Johnston, 1990) and an Episodic Memory account of repetition priming (see Roediger, 1990), and are discussed in terms of a common mechanism for priming, learning and the representation of familiarity.