TY - JOUR

T1 - 'I have never bounced back': resilience and living with dementia

AU - Windle, Gill

AU - Roberts, Jennifer

AU - MacLeod, Catherine

AU - Algar-Skaife, Katherine

AU - Sullivan, Mary Pat

AU - Brotherhood, Emilie

AU - Jones, Catrin Hedd

AU - Stott, Joshua

PY - 2023/12/2

Y1 - 2023/12/2

N2 - This work responds to the limited research about resilience when living with dementia and develops a conceptual model to inform service development and healthcare practices for this population. An iterative process of theory building across four phases of activity (scoping review  = 9 studies), stakeholder engagement (  = 7), interviews (  = 11) generated a combined sample of 87 people living with dementia and their carers, including those affected by rare dementias to explore their lived experiences. An existing framework of resilience developed in other populations served as the starting point to analyse and synthesise the findings, inspiring a new conceptual model of resilience unique to the experience of living with dementia. The synthesis suggests resilience encompasses the daily struggles of living with a dementia; people are not flourishing, thriving or 'bouncing back', but are managing and adapting under pressure and stress. The conceptual model suggests resilience may be achieved through the collective and collaborative role of psychological strengths, practical approaches to adapting to life with dementia, continuing with hobbies, interests and activities, strong relationships with family and friends, peer support and education, participating in community activities and support from healthcare professionals. Most of these themes are not reflected in resilience outcome measures. Practitioners adopting a strengths-based approach utilising the conceptual model at the point of diagnosis and post-diagnosis support may help individuals achieve resilience through appropriately tailored services and support. This 'resilience practice' could also extend to other degenerative or debilitating chronic conditions a person faces in their life course.

AB - This work responds to the limited research about resilience when living with dementia and develops a conceptual model to inform service development and healthcare practices for this population. An iterative process of theory building across four phases of activity (scoping review  = 9 studies), stakeholder engagement (  = 7), interviews (  = 11) generated a combined sample of 87 people living with dementia and their carers, including those affected by rare dementias to explore their lived experiences. An existing framework of resilience developed in other populations served as the starting point to analyse and synthesise the findings, inspiring a new conceptual model of resilience unique to the experience of living with dementia. The synthesis suggests resilience encompasses the daily struggles of living with a dementia; people are not flourishing, thriving or 'bouncing back', but are managing and adapting under pressure and stress. The conceptual model suggests resilience may be achieved through the collective and collaborative role of psychological strengths, practical approaches to adapting to life with dementia, continuing with hobbies, interests and activities, strong relationships with family and friends, peer support and education, participating in community activities and support from healthcare professionals. Most of these themes are not reflected in resilience outcome measures. Practitioners adopting a strengths-based approach utilising the conceptual model at the point of diagnosis and post-diagnosis support may help individuals achieve resilience through appropriately tailored services and support. This 'resilience practice' could also extend to other degenerative or debilitating chronic conditions a person faces in their life course.

KW - Resilience

KW - carers

KW - dementia

KW - qualitative

U2 - 10.1080/13607863.2023.2196248

DO - 10.1080/13607863.2023.2196248

M3 - Article

VL - 27

SP - 2355

EP - 2367

JO - Aging and Mental Health

JF - Aging and Mental Health

SN - 1360-7863

IS - 12

ER -