Participation as means for adaptation in dementia: a conceptual model

Abstract

Objectives: There are a number of conceptual models of dementia, capturing a range of biopsychosocial factors. Few integrate the lived experience of dementia. The aim of this study was to develop a conceptualisation grounded in the first-hand accounts of living with the condition and reflecting its complexity. Method: The study was conducted within an explanatory, critical realist paradigm. An overarching narrative approach, informed by a previously completed systematic review and metasynthesis of research on the lived experience of dementia and the assumptions of complexity theory, was used to guide data collection and analysis. Data were contributed by 31 adults, including 12 people living with dementia and 19 family caregivers. Results: The experience of living with dementia was conceptualised as a process of adaptation through participation, emerging from ongoing, dynamic and nonlinear interactions between the adaptive capacity of a person with dementia and the adaptive capacity within the environment. The proposed conceptual model describes contexts and mechanisms which shape this capacity. It identifies a range of potential outcomes in dementia. These outcomes reflect interactions and the degree of match between the adaptive capacity of a person and the adaptive capacity within the environment. Conclusion: By recognising and exploring the potential for adaptation and enduring participation in dementia, findings of this research can support practitioners in facilitating positive outcomes for people affected by the condition. ARTICLE HISTORY

A Biopsychosocial-Ecological Framework for Family-Framed Dementia Care

“…Gorska et al (35) examined the emerging experience of people living with dementia and found that their potential to adjust to continuous changes is influenced by access to and quality of both personal and contextual resources which remain in a constant, transactional relationship to each other. They later found the process of adaptation to be one that involved active participation through ongoing, dynamic and non-linear interactions between the adaptive capacity of a person with dementia and the adaptive capacity within the environment (36). Together these studies indicate the importance and value of considering people with dementia and their needs within the relationships and contexts of their larger environments.…”

An Investigation of the Wishes, Needs, Opportunities and Challenges of Accessing Meaningful Activities for People Living with Mild to Moderate Dementia

“…People are looking for more self-determination and opportunities to conduct activities on their own, to continue to learn new things and be creative, as well as feel useful to others, have social contacts and give meaning to life [ 16 ]. The capacity of people with dementia to be involved in daily activities depends on the match between the person’s and the environment’s adaptive capacity [ 17 ]. As a result, people might not be able to engage with an activity in its original form but be able to pursue it if it is modified and personalised to suit their skills [ 18 ].…”