Experiences of attending day care services designed for people with dementia

Margit Gausdal Strandenæs et al. | Experiences of attending day care services designed for people with dementia – a qualitative study with individual interviews |  Aging and Mental Health | Published online 27th March 2017

Objectives: Day care is assumed to promote independence in home-dwelling people with dementia, increase well-being and enhance social stimulation. Few studies have directly engaged people with dementia to better understand the benefits and impacts of such services. The aim of this study was to explore attendees’ experiences with day care designed for people with dementia.

Method: This study had a qualitative descriptive design and included individual interviews with 17 users attending day care. The analysis was undertaken using content analyses.

Results: The participants reported that day care had a positive influence on their physical functioning, cognition, well-being, and situation at home because they were provided with social stimulation, meals, and activities. Day care contributed to the maintenance of a rhythm and structure in everyday life. Furthermore, the staff contributed to making the day care a safe place to be and enhanced a sense of belonging.

Conclusion: This study reveals the positive impact of day care on the daily lives of people with dementia because this service contributes to the enhancement of activities and social support, prevents isolation, and enhances practical and cognitive functioning as experienced by the users. The staff has a major impact on the experience of the participants in the day care.

Measuring younger onset dementia:the ‘lived experience’ for patients and caregivers

Spreadbury, J H & Kipps, C. Measuring younger onset dementia: What the qualitative literature reveals about the ‘lived experience’ for patients and caregivers.  | Dementia. | Published online: January 23, 2017

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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.

 

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.

 

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.

 

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.

Carers: The navigators of the maze of care for people with dementia—A qualitative study

Jamieson, M. et al. (2016) Dementia. 15(5) pp. 1112-1123

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Background: Dementia is a challenge in our society, with individuals accessing services across multiple settings. Carers are navigating and delivering care services in the home. This research sought to investigate the experiences of people with dementia and their carers when transitioning home from hospital.

Methods: This study used a qualitative descriptive design, employing in-depth interviews with 30 carers recruited through networks known to one state branch of Alzheimer’s Australia. Emerging themes were validated in one focus group.

Results: During the hospital stay carers experienced a paradox: being required to deliver care yet perceiving that they were being ignored in regard to decisions about care. The time in hospital was considered by some carers to be stressful, as they were concerned about the safety of the person with dementia. Many reported that discharge home was rarely planned and coordinated. Returning home carers found re-establishing and/or accessing new services challenging, with available services often inappropriate to need.

Conclusion: The paradox of the care experience in the acute setting, whereby the carer was either invited, or sought, to deliver care, yet was excluded in staff decisions about that care, challenges the current communication and coordination of care. For people with dementia and their carers, there is a need for a coordinated seamless service that enables continued unbroken care and support from acute care to home. Carers also need support navigating the wide range of services available and importantly both carers and care providers may need to understand service boundaries.

Recommendations: This study highlights the need to acknowledge the expertise of the carer, and their need for support. Enabling a smooth discharge from hospital and support to navigate care access in the community is paramount. These experiences provide insight into gaps in service provision and modifying existing services may lead to improved experiences.

Read the abstract here

Learning and knowing technology as lived experience in people with Alzheimer’s disease: a phenomenological study

Rosenberg, L. & Nygård, L. Aging & Mental Health | Published online: 03 September 2016

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Objectives: Most research on learning in the field of dementia has studied teaching approaches, while little is known about learning as experienced and enacted by the people with dementia. The aim was to explore the lived experience of learning and maintaining knowledge related to technology among people with mild to moderate stage dementia.

Method: Seven persons with dementia were interviewed in-depth, and data were analyzed with a phenomenological approach.

Results: The participants positioned themselves on a continuum from ‘Updating and expanding is not for me’ to ‘Updating and expanding is really for me’. They used different ways of learning in their everyday life – relying on one’s habituated repertoire of actions, on other people or on technology itself, or belonging to a learning context.

Conclusions: We have much to gain from better understanding of how people with dementia strive to learn and maintain their skills and knowledge related to technology. This is particularly important as they seem to use other approaches than those employed in current teaching methods. The necessity of learning stands out particularly when it comes to the interaction with the current multitude and ever-changing designs of technologies, including assistive technologies developed specifically to support people with dementia.

Read the abstract here

A qualitative study on becoming cared for in Alzheimer’s disease: the effects to women’s sense of identity

Borely, G. & Hardy, S. Aging & Mental Health. Published online: 29 Jun 2016

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Image source: Marina Caruso – Wellcome Images // CC BY-NC-ND 4.0

Objective: To explore the lived experience of becoming cared for and the impact this has on the identity and sense of self of women with Alzheimer’s disease.

Method: Eight women with mild-to-moderate Alzheimer’s disease were interviewed in Northamptonshire, England, on two separate occasions about their experiences relating to needing assistance with instrumental activities of daily living (IADL) tasks. Interpretative phenomenological analysis was the approach used to underpin this research.

Results: Changes in the women’s identity affected by the increased need for assistance with IADL tasks were expressed in terms of: who I am; unhappy being me; fighting to remain me; I’m not the same, but it doesn’t worry me; and acceptance and contentment.

Conclusion: This study offers an alternative perspective to the view that all women with Alzheimer’s disease experience becoming cared for as a negative event in their lives. Some factors universally perceived as being a result of Alzheimer’s disease may be a normal part of the life course.

Read the abstract here