TY - JOUR

T1 - Exploring the experiences of living with Lewy body dementia

T2 - An integrative review

AU - Bentley, Allison

AU - Salifu, Yakubu

AU - Walshe, Catherine

PY - 2021/12/31

Y1 - 2021/12/31

N2 - AimLewy body dementia is a common neurodegenerative dementia with unique challenges in managing day-to-day life. A more in-depth multifaceted picture of the Lewy body dementia lived experience will enable identification of best practice and future research direction. The review aim was to explore experiences of people living with Lewy body dementia and their family carers.DesignIntegrative review method informed by Whittemore and Knafl, supported by the information retrieval framework PALETTE. A convergent integrated approach enabled synthesis of key findings and theme identification.Data sourcesMedline, CINAHL, PsycINFO, AMED, and ALOIS databases were systematically searched to find studies published between 1995 and 2020.Review MethodsTwenty-six articles from twenty studies were synthesized (from 1583 retrieved). Quality and relevance were appraised using the Mixed-Methods Appraisal Tool and Gough's ‘Weight of Evidence’ framework. Data management was supported by ATLAS.ti 8 and COVIDENCE software.ResultsFour themes were identified: living with an uncertain diagnosis and prognosis; fear of the now – worry for the future; living with behavioural and psychiatric symptoms; and maintaining a social and emotional life. People reported difficulty finding information and support around diagnosis, disease progression and managing complex symptoms. The result is increased caregiver burden, grief and stress and reduced quality of life.ConclusionDelayed diagnosis and complex symptom burden means people are not getting the timely support and information they need to live and die well. Current evidence is largely quantitative, with a focus on family caregiver burden and unmet need. The challenge remains in how to capture a more holistic picture of the lived experience for people living with Lewy body dementia and those who care for them.ImpactThis review highlighted current knowledge and identified gaps in exploring the lived experience for people with Lewy body dementia and their families.

AB - AimLewy body dementia is a common neurodegenerative dementia with unique challenges in managing day-to-day life. A more in-depth multifaceted picture of the Lewy body dementia lived experience will enable identification of best practice and future research direction. The review aim was to explore experiences of people living with Lewy body dementia and their family carers.DesignIntegrative review method informed by Whittemore and Knafl, supported by the information retrieval framework PALETTE. A convergent integrated approach enabled synthesis of key findings and theme identification.Data sourcesMedline, CINAHL, PsycINFO, AMED, and ALOIS databases were systematically searched to find studies published between 1995 and 2020.Review MethodsTwenty-six articles from twenty studies were synthesized (from 1583 retrieved). Quality and relevance were appraised using the Mixed-Methods Appraisal Tool and Gough's ‘Weight of Evidence’ framework. Data management was supported by ATLAS.ti 8 and COVIDENCE software.ResultsFour themes were identified: living with an uncertain diagnosis and prognosis; fear of the now – worry for the future; living with behavioural and psychiatric symptoms; and maintaining a social and emotional life. People reported difficulty finding information and support around diagnosis, disease progression and managing complex symptoms. The result is increased caregiver burden, grief and stress and reduced quality of life.ConclusionDelayed diagnosis and complex symptom burden means people are not getting the timely support and information they need to live and die well. Current evidence is largely quantitative, with a focus on family caregiver burden and unmet need. The challenge remains in how to capture a more holistic picture of the lived experience for people living with Lewy body dementia and those who care for them.ImpactThis review highlighted current knowledge and identified gaps in exploring the lived experience for people with Lewy body dementia and their families.

KW - caregivers

KW - carer

KW - dementia with Lewy bodies

KW - experience

KW - family

KW - informal care

KW - integrative review

KW - Lewy body dementia

KW - nursing

KW - Parkinson's disease dementia

U2 - 10.1111/jan.14932

DO - 10.1111/jan.14932

M3 - Journal article

VL - 77

SP - 4632

EP - 4645

JO - Journal of Advanced Nursing

JF - Journal of Advanced Nursing

SN - 0309-2402

IS - 12

ER -