A qualitative study exploring the difficulties influencing decision making at the end of life for people with dementia

NMUH Staff Publications

<h4 style="font-size: 13px; margin: 0px 0.25em 0px 0px; text-transform: uppercase; float: left; font-family: arial, helvetica, clean, sans-serif;"><span style="font-size: 10pt;">BACKGROUND:</span></h4><p style="margin: 0px 0px 0.5em; font-size: 1.04em; font-family: arial, helvetica, clean, sans-serif;"><span style="font-size: 10pt;">Dementia is a progressive neurodegenerative condition characterized by declining functional and cognitive abilities. The quality of end of life care for people with dementia in the UK can be poor. Several difficult decisions may arise at the end of life, relating to the care of the person with dementia, for example management of comorbidities.</span></p><h4 style="font-size: 13px; margin: 0px 0.25em 0px 0px; text-transform: uppercase; float: left; font-family: arial, helvetica, clean, sans-serif;"><span style="font-size: 10pt;">OBJECTIVE:</span></h4><p style="margin: 0px 0px 0.5em; font-size: 1.04em; font-family: arial, helvetica, clean, sans-serif;"><span style="font-size: 10pt;">To explore difficulties in decision making for practitioners and family carers at the end of life for people with dementia.</span></p><h4 style="font-size: 13px; margin: 0px 0.25em 0px 0px; text-transform: uppercase; float: left; font-family: arial, helvetica, clean, sans-serif;"><span style="font-size: 10pt;">DESIGN:</span></h4><p style="margin: 0px 0px 0.5em; font-size: 1.04em; font-family: arial, helvetica, clean, sans-serif;"><span style="font-size: 10pt;">Qualitative methodology using focus groups and semi-structured interviews and thematic analysis methods.</span></p><h4 style="font-size: 13px; margin: 0px 0.25em 0px 0px; text-transform: uppercase; float: left; font-family: arial, helvetica, clean, sans-serif;"><span style="font-size: 10pt;">SETTINGS AND PARTICIPANTS:</span></h4><p style="margin: 0px 0px 0.5em; font-size: 1.04em; font-family: arial, helvetica, clean, sans-serif;"><span style="font-size: 10pt;">Former (n=4) and current (n=6) family carers of people with experience of end of life care for a person with dementia were recruited from an English dementia voluntary group in 2015. A further 24 health and care professionals were purposively sampled to include a broad range of expertise and experience in dementia end of life care.</span></p><h4 style="font-size: 13px; margin: 0px 0.25em 0px 0px; text-transform: uppercase; float: left; font-family: arial, helvetica, clean, sans-serif;"><span style="font-size: 10pt;">RESULTS:</span></h4><p style="margin: 0px 0px 0.5em; font-size: 1.04em; font-family: arial, helvetica, clean, sans-serif;"><span style="font-size: 10pt;">Four key themes were identified as follows: challenges of delivering coherent care in dynamic systems; uncertainty amongst decision makers; internal and external conflict amongst decision makers; and a lack of preparedness for the end of life. Overarching difficulties such as poor communication, uncertainty and conflict about the needs of the person with dementia as well as the decision maker's own role can characterize decision making at the end of life.</span></p><h4 style="font-size: 13px; margin: 0px 0.25em 0px 0px; text-transform: uppercase; float: left; font-family: arial, helvetica, clean, sans-serif;"><span style="font-size: 10pt;">CONCLUSIONS:</span></h4><p style="margin: 0px 0px 0.5em; font-size: 1.04em; font-family: arial, helvetica, clean, sans-serif;"><span style="font-size: 10pt;">This study suggests that decision making at the end of life for people with dementia has the potential to be improved. More planning earlier in the course of dementia with an on-going approach to conversation may increase preparedness and family carers' expectations of end of life.</span></p>