Post-diagnostic Support Research Articles

Service-related needs of older people with dementia: perspectives of service users and their unpaid carers

Dementia is a major cause of disability among older people and constitutes one of the greatest challenges currently facing families and health and social care services in the developed world. In response to trends in dementia prevalence and the impact the condition has on peoples' lives, dementia care has been placed high on the public and political agenda in the United Kingdom. However, despite significant public resources being allocated to combat the impact of the disease, recent evidence indicates that numerous challenges in relation to service provision remain. This study aimed to develop a deeper understanding of the lived experience of people with dementia regarding their service-related needs. The study made use of data gathered through individual semi-structured, narrative interviews conducted with persons with experience of dementia and their unpaid carers. Although participants were generally satisfied with the services they received, a number of unmet needs related to service provision were identified. In terms of diagnostic procedures the findings of this study indicate the need for early diagnosis delivered through a comprehensive assessment package. The participants also highlighted the need for well-coordinated post-diagnostic support, greater continuity of care concerning the personnel involved, and enhanced access to non-pharmacological interventions to support identity and social engagement. This study contributes to a better understanding of service-related needs of people with dementia in relation to diagnostic procedures and post-diagnostic support.

Dementia diagnosis and post-diagnostic support in Scottish rural communities: Experiences of people with dementia and their families

This paper explores the reported difficulties and satisfactions with diagnostic processes and post-diagnostic support offered to people with dementia and their families living in the largest remote and rural region in Scotland. A consultation with 18 participants, six people with dementia and 12 family members, was held using semi-structured interviews between September and November 2010. Three points in the diagnostic process were explored: events and experiences pre-diagnosis; the experience of the diagnostic process; and post-diagnostic support. Experiences of people with dementia and their carers varied at all three points in the diagnostic process. Participant experiences in this study suggest greater efforts are required to meet Government diagnosis targets and that post-diagnostic support needs to be developed and monitored to ensure that once a diagnosis is given people are well-supported. Without post-diagnostic provision Government targets for diagnosis are just that, quota targets, rather than a means to improve service experiences.

Effectiveness of a recovery‐orientated psychiatric intervention package on the wellbeing of people with early dementia: a preliminary randomised controlled trial

To investigate whether recovery-orientated psychiatric assessment and therapeutic intervention enhances the wellbeing of people with dementia and their family carers. In a preliminary randomised controlled trial, 48 people with early dementia were recruited. Of 34 who completed the trial, 17 were in the recovery and 17 in the treatment as usual group. Recovery participants received a recovery-focused pre-diagnostic wellbeing assessment and counselling, diagnostic consultation with written feedback and post-diagnostic support over a period of 6 months using the WHO Wellbeing Index as the primary measure, and Mini Mental State Examination, Cornell Scale for Depression in Dementia, EUROQOL and Zarit Burden Interview as secondary outcome measures. People in the recovery group showed a significant improvement in the WHO Wellbeing Index (18.3 for recovery vs 9.46 for treatment as usual; t = -2.28, p = 0.03), with trends of improvement in other outcome measures. This trial shows that a recovery-focused diagnostic consultation and post-diagnostic support enhance the wellbeing of people with mild cognitive impairment and early dementia.

Diagnosis and disclosure of dementia – A comparative qualitative study of Irish and Swedish General Practitioners

Objectives: To explore the attitudes of Irish and Swedish General Practitioners (GPs) to the diagnosis and disclosure of dementia to patients; to investigate GP under-graduate/post-graduate training in dementia; to examine the post-diagnostic support services available to GPs in both countries and to investigate the extent to which dementia is perceived as stigmatising. Methods: A cross-national exploratory qualitative design was used. In-depth interviews were conducted with five Irish and four Swedish GPs. Interviews were transcribed, translated, thematically coded and categorised. Results: Both Irish and Swedish GPs unequivocally considered the early diagnosis of dementia important but neither group was proactive in making a diagnosis. Both groups relied heavily on family members or patients to bring to their attention memory loss and cognitive impairment problems. Most GPs reported a reluctance to diagnose and several acknowledged going to considerable lengths to avoid using the word ‘dementia’. The Swedish GPs had more exposure to dementia-specific training, saw the value in training and were generally very satisfied with post-diagnostic dementia services available to patients, while Irish GPs were less likely to have undergone training, were more equivocal about its value and were very dissatisfied with the community services available. Conclusion: Despite the presence of very adequate post-diagnostic support services for people recently diagnosed with dementia, the majority of Swedish GPs like their Irish counterparts displayed therapeutic nihilism and were reluctant to speak overtly to their patients about their dementia. Dementia continues to be a stigmatising illness for both Irish and Swedish GPs.

The Happy Crowd

This article aims to outline our experience and reflections of planning, running and evaluating of a Post-Diagnostic Support Group for individuals with recently diagnosed dementia.

A Review of Diagnostic Process and Postdiagnostic Support for People With Dementia in Rural Areas

Early diagnosis of dementia allows the affected individuals to make plans, and helps services to identify and act on need. Previous work has suggested that obtaining an early diagnosis in rural areas can be difficult. This paper discusses diagnosis and postdiagnostic support for people with dementia, with a focus on service delivery in rural areas. A review of published English language literature 1999 to 2011 identified in Medline, PsycINFO, PubMed, Cochrane Library, and ScienceDirect. Primary care services play a key role in accessing services in many health care systems. The role of primary care staff, and in particular general practitioners, is greatest in rural communities where specialist service access is often reduced. Despite this, rural staff often report limited training on supporting people with dementia. Postdiagnostic services can be more difficult to access in rural areas, and informal caregivers in rural areas can be more reluctant to seek such services. Transport difficulties and distance from specialist services can act as a barrier to service use. Memory services have been offered in both rural and urban areas. Addressing stigma, supporting staff, and signposting access are important in all areas, but seem to be particularly important in rural areas. Training and support for general staff in rural areas can be improved. Memory services provide one way of delivering services in rural areas. Service planners should take negative perceptions of dementia, barriers to access, and training of generalist service providers into account when designing dementia services in rural areas.