Elsevier

Collegian

Volume 24, Issue 5, October 2017, Pages 427-432
Collegian

Experiences and expectations of living with dementia: A qualitative study

https://doi.org/10.1016/j.colegn.2016.09.003Get rights and content

Abstract

Background

There is a paucity of literature detailing the expectations that people with dementia have for the future; therefore the capacity to reflect their views in service provision is limited.

Aim

This paper reports the findings of research that explored and described experiences of people diagnosed with dementia and their expectations of their support needs and how they wished to live their lives.

Method

An application of the grounded theory method was used and data were collected from 24 participants using semi structured interviews. Coding principles and the constant comparative method of analysis central to grounded theory were used to analyse data.

Findings

The core problem that emerged was conceptualised as losing control. This concept encompassed loss of role function and independence, uncertainty about the future and fear of being a burden. To manage the problem of losing control, participants engaged in a process of finding meaning where they sought answers to address their concerns and implemented strategies to assist them to maintain connectedness to their pre-diagnosis life for as long as possible.

Discussion

People with dementia have limited knowledge on a likely dementia trajectory and find it difficult to identify their future support needs. Health care providers are required to help people with dementia identify what these needs might be and how they can maintain connectedness to their pre-diagnosis life.

Conclusion

To empower people living with dementia, information needs to be made available to them and their families to help them construct their plans for the future.

Section snippets

Summary of relevance

Problem – Little is known about the expectations that people with dementia have for the future.

What is already known

The progressive decreased cognitive functioning that people with dementia experience limits the time they have to understand dementia and to plan for the future.

What this paper adds

Evidence that this group of people with dementia lacked understanding of their likely dementia trajectory, limiting the extent to which they could identify and address their future support needs and maintain connectedness to society.

Introduction and background

Dementia is the name given to a syndrome or collection of symptoms caused by disorders affecting the brain that result in a gradual decline in cognitive functioning (Banerjee et al., 2007). It is estimated that over 46.8 million people worldwide have some form of dementia with this number expected to rise to over 131.5 million by 2050 (Alzheimer's Disease International, 2015). In 2015, it was predicted that there would be 315,963 people in Australia living with dementia, with this number

Methodology

This Australian research used an application of the Grounded Theory (GT) method developed by Glaser and Strauss (2012). The constant comparative method of analysis, central to the GT method, was used to guide data analysis and to allow categories and subcategories to emerge. GT stems from symbolic interactionism; an approach to the study of human conduct, exploring social processes that are present within human behavior (Charon, 1995). The constant comparative method of analysis allowed the

Results

Twelve men and twelve women consented to be interviewed between November 2013 and September 2015. Their educational qualifications ranged from primary school certification to doctoral degrees and occupations ranged from tradespeople to professionals. Seventeen participants lived with their spouses, two with a son or daughter and five lived alone. The majority of participants were diagnosed in 2013 or 2014, with Alzheimer’s disease (n = 8), Vascular dementia (n = 3), Frontal Lobe dementias (n = 3),

Discussion

This study aimed to explore and describe experiences of people diagnosed with dementia, and their expectations of their support needs and how they wished to live their lives. The findings provided additional evidence on experiences of losing control that people with dementia encounter such as loss of role and loss of independence, previously investigated by Harris and Keady (2009) and Roach and Drummond (2014). Findings also provided new insights into participants’ lack of knowledge regarding a

Conclusion

Globally, the number of people with dementia is increasing and there is a push to identify how services can meet their long term care needs in ways that are consistent with consumers’ wishes. This paper provides insight into the experience and expectations of people living with dementia and demonstrates a requirement for the empowerment of people living with dementia so that they can be autonomous in decision making related to their future needs.

Acknowledgements

The author would like to acknowledge the 24 participants who took part in this component of the research and spoke of their experiences and the West Australian Nurses Memorial Charitable Trust for financial assistance.

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