What are the experiences of people with dementia in employment?

Abstract

Statistics show that an increase in the statutory retirement age in the UK will mean that many more people will develop a dementia while still in employment. A review of the literature confirmed that there are no existing studies in the UK which examine this issue in any detail. The aim of this study was to investigate the experiences of people who develop a dementia while still in employment and to understand how they make sense of these experiences; therefore a qualitative explorative inquiry based on an Interpretive Phenomenological Analysis methodology was used. Interviews with five people who had developed a dementia while still in employment were carried out, with ages ranging from 58 to 74 years. Interview transcripts were analysed and four super-ordinate themes were identified: the realization that something is wrong; managing the situation in the workplace; trying to make sense of change; and coming to terms with retirement or unemployment. The results showed that people who develop a dementia while still in employment do not always receive the 'reasonable adjustments' in the workplace to which they are entitled under the Equality Act (2010). Some of the participants felt that they were poorly treated by their workplace and described some distressing experiences. The study highlights the need for more effective specialized advice and support regarding employment issues and more research into the numbers of people in the UK that are affected by this issue.

What is the impact of dementia on occupational competence, occupational participation and occupational identity for people who experience onset of symptoms while in paid employment? A scoping review

“…During the pre‐diagnostic phase, some workers became increasingly aware of changes in capacity to complete complex tasks and adopted compensatory strategies (Chaplin & Davidson, ). Difficulties maintaining concentration, remembering work routines and coping with normal work stressors became apparent, along with a decline in trust in one's ability to competently function within the workplace (Chaplin & Davidson; Öhman et al ., ). However, without diagnosis this became a period of uncertainty, accompanied by growing fears that changes were related to underlying age‐related health issues (Chaplin & Davidson).…”

“…Difficulties maintaining concentration, remembering work routines and coping with normal work stressors became apparent, along with a decline in trust in one's ability to competently function within the workplace (Chaplin & Davidson; Öhman et al ., ). However, without diagnosis this became a period of uncertainty, accompanied by growing fears that changes were related to underlying age‐related health issues (Chaplin & Davidson). During these early and undiagnosed stages, negative experiences associated with changes in competency occurred, impacting on other domains of occupational engagement.…”

“…Typical changes reported by workplace informants included forgetfulness, making critical mistakes and becoming increasingly slow in completing tasks (Öhman et al .). Those with dementia reported an initial reluctance to acknowledge symptoms, and in hindsight recognised word‐finding and short‐term memory problems, inability to write and remember names, and difficulty adjusting to change, as part of their disease (Chaplin & Davidson). For example, a nursing assistant stated: ‘all through my life I had been a good speller and I even got to the point one day that I spelled my own name wrong and at that point I did become concerned’ (Chaplin & Davidson, p. 151).…”

“…Those with dementia reported an initial reluctance to acknowledge symptoms, and in hindsight recognised word‐finding and short‐term memory problems, inability to write and remember names, and difficulty adjusting to change, as part of their disease (Chaplin & Davidson). For example, a nursing assistant stated: ‘all through my life I had been a good speller and I even got to the point one day that I spelled my own name wrong and at that point I did become concerned’ (Chaplin & Davidson, p. 151). Rigid thinking as well as decreased information processing, visual scanning, planning, complex and problem solving were also reported (Peisah & Wilhlem, ).…”

Age-appropriate services for people diagnosed with young onset dementia (YOD): a systematic review

“…They also need to negotiate changing family dynamics with a particular focus on children and teenagers (Chow, Pio, & Rockwood, 2011;Gibson, Anderson, & Acocks, 2014;Hutchinson, Roberts, Daly, Bulsara, & Kurrle, 2016;Johannessen, Bruvik, & Hauge, 2015;Lockeridge & Simpson, 2013;Morhardt et al, 2015;P. Roach & Drummond, 2014;Shnall, 2015;Svanberg, Spector, & Stott, 2011;Thompson, 2011), accommodate changing care needs along the disease trajectory (Bakker et al, 2013;Bakker et al, 2010) and need to seek financial and legal advice as employment is discontinued and spouses give up work to become the main caregiver or take on work to compensate for lost income (Alzheimer's Society, 2015;Chaplin & Davidson, 2016;Picard, Pasquier, Martinaud, Hannequin, & Godefroy, 2011;Ritchie, Banks, Danson, Tolson, & Borrowman, 2015). The need for age-appropriate service design for people diagnosed with YOD has been discussed extensively in a number of comprehensive, non-systematic literature reviews of YOD (Baptista et al, 2016;Beattie et al, 2002;Cabote, Bramble, & McCann, 2015;Millenaar et al, 2016;Richardson et al, 2016;Sansoni et al, 2016;Sansoni et al, 2014;Westera et al, 2014), reports (Austin A, 2016;Brown et al, 2012;Clayton-Turner et al, 2016) and papers across various disciplines (Armari, Jarmolowicz, & Panegyres, 2013;Bakker et al, 2014;Bakker et al, 2010;Ducharme, Kergoat, Antoine, Pasquier, & Coulombe, 2014a;Ducharme et al, 2014b;…”