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March 2019 -
Volume 17, Issue 2

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From the Editor

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Editorial

Dr. Abdulrazak Abyad
DOI: 10.5742/MEWFM.2019.93623

Original Contribution

Self-monitoring of Blood Glucose Among Type-2 Diabetic Patients: An Analytical Cross-Sectional Study
[pdf]
Ahmed S. Alzahrani, Rishi K. Bharti, Hassan M. Al-musa, Shweta Chaudhary
DOI: 10.5742/MEWFM.2019.93624

White coat hypertension may actually be an acute phase reactant in the body
[pdf]
Mehmet Rami Helvaci, Orhan Ayyildiz, Orhan Ekrem Muftuoglu, Mehmet Gundogdu, Abdulrazak Abyad, Lesley Pocock
DOI: 10.5742/MEWFM.2019.93625

Case Report

An Unusual Persistent Mullerian Duct Syndrome in a child in Abha city: A Case Report
[pdf]
Youssef Ali Mohamad Alqahtani, Abdulrazak Tanim Abdulrazak, Hassa Gilban, Rasha Mirdad, Ashwaq Y. Asiri, Rishi Kumar Bharti, Shweta Chaudhary
DOI: 10.5742/MEWFM.2019.93628

Population and Community Studies

Prevalence of abdominal obesity and its associated comorbid condition in adult Yemeni people of Sana’a City
[pdf]
Mohammed Ahmed Bamashmos
DOI: 10.5742/MEWFM.2019.93626

Smoking may even cause irritable bowel syndrome
[pdf]
Mehmet Rami Helvaci, Guner Dede, Yasin Yildirim, Semih Salaz, Abdulrazak Abyad, Lesley Pocock
DOI: 10.5742/MEWFM.2019.93629

Systematic literature review on early onset dementia
[pdf]
Wendy Eskine
DOI: 10.5742/MEWFM.2019.93627



Middle East Quality Improvement Program
(MEQUIP QI&CPD)

Chief Editor -
Abdulrazak Abyad MD, MPH, MBA, AGSF, AFCHSE

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Publisher -
Lesley Pocock
medi+WORLD International
AUSTRALIA
Email
: lesleypocock@mediworld.com.au
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abyad@cyberia.net.lb
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March 2019 - Volume 17, Issue 3

Early Onset Dementia: A Systematic Review of the Literature to Inform Qualitative Experiences


Wendy Erskine



Correspondence:
Wendy Erskine BA, LLB, A.B.P.I., M.Litt PhD.
St Andrews,
Fife,
Scotland

Email:
wendy.erskine2014@gmail.com

Received: January 2019; Accepted: February 2019; Published: March 1, 2019
Citation: Wendy Erskine. Early Onset Dementia: A Systematic Review of the Literature to Inform Qualitative Experiences. World Family Medicine. 2019; 17(3): 34-58. DOI: 10.5742/MEWFM.2019.93627

Abstract


There is increasing recognition that EOD (Early Onset Dementia) represents an important social problem affecting economic and social impacts (Campbell et al., 2008; Johannessen et al., 2018). Recent research calls for greater efforts to be made in consulting with the PwD (people with dementia) directly (Allen 2001; Bamford & Bruce 2000). The condition is understood to occur between the ages of 45-65 (Mercy, 2008). This makes EOD a sub-group of dementia with numerous differences when compared to later onset dementia. These include the likelihood of still being in work and having a family to raise. Being responsible for an income and for dependent others is particularly difficult for those affected. Additionally, the social and psychological context for younger people is different (Beattie, 2004). PwEOD (people with Early Onset Dementia) are more likely to be physically fitter than those with later onset dementia which may impact on their physical care needs. The existing expectation within health and social care agencies for PwEOD is in keeping within an older person’s framework of care which may well be inappropriate. This may have occurred in the past due to biomedical assumptions regarding the condition (Kitwood, 1997; van Vliet et al., 2017). This also suggests that little attention has been paid to subjective experiences (van Vliet, 2017). The need to elicit the views and subjective experiences of PwEOD is therefore gaining increasing recognition within health and social care research (van Vliet, 2010). Literature has been modestly growing in the subject area to demonstrate how PwEOD have expressed their views and experience of dementia successfully (Page and Keady, 2010; Ohman et al., 2001). However, most of the extant literatureis based on family carers (Cabote, 2015; Kobiske and Bekhet, 2018). Whilst carers’ views are important they should not be used as a substitute for the views of younger people with dementia (Goldsmith 1996, Whitlatch 2001). Given the limited research available, both the views of PwEOD and their family carers are incorporated into the systematic literature review.

Key words: Early onset dementia (EOD), qualitative, people with early onset dementia (PwEOD), family kin, meta-ethnography, stigma, liminality and chronicity, biographical disruption, losses, coping


INTRODUCTION

Personal accounts describing EOD have potential to inform clinical and care provision as well as informing other dementia subsets. Examining first person accounts makes this a valuable exercise. This may be assumed as PwEOD (People with Early Onset Dementia) possess more faculties with which to tell about lived experience from first person accounts.

METHOD

Study aim: This systematic review paper sought to address the following question:
‘How do PwEOD as a diagnosed sub group of other dementias and their immediate family experience living with EOD?’

Study inclusion: Studies were included and excluded according to the following criteria: a diagnosis of EOD between the ages of 45-65 [1]; research dated between 1998-2018;[2] in English language; qualitative and peer reviewed papers. The key aim of study inclusion was to capture the experience of living with EOD through the available literature in the field. Personal experiences were sought in the literature on PwEOD and their immediate family living with the experience post-diagnosis. The scoping review uncovered the relative lack of studies to date on the experiences of PwEOD, therefore studies were inclusive of spouses, partners, children and adult dependents as people living with the PwEOD. Searches were kept broad and unconstrained by further filters in order to capture a fuller picture of the issues and experiences connected to EOD.

Study exclusion: Studies focusing solely on people presenting with dementia younger than 45; studies with a predominant interest in; dementia caused by HIV, traumatic brain injury, Down’s syndrome, congenital birth conditions likely to include dementia, Huntington’s chorea and alcohol-related dementia were excluded. Systematic literature reviews were excluded.

Scoping: A scoping exercise of the literature took place prior to the systematic literature review which identified EOD as a sub-group of dementia under-represented in the literature. Google Scholar and Abertay’s Library Search including serendipitous searches using prior knowledge of the research field extended the search in preparation for the systematic review.

Search strategy: The author then searched databases which were selected for their social and clinical perspectives through EBSCOhost; Web of Science and Cinahl plus with text, Psychology and Behavioural Sciences Collection, Scopus and Sage. The search terms were: dement*, early onset dementia, young onset dementia, presenile-Alzheimer* and working age dementia. These were searched as single terms using Boolean phrasing; ‘OR’ then once the searches were captured, refined with; ‘AND’ then stored for scrutiny at the next stage.

Selection of papers: The search located five-hundred-and-fifty-two (522) papers. Duplicates were removed (n=22). The remaining studies’ (n=500) abstracts and titles were screened. Twenty-two studies (n=22) were retained and full texts read. This left sixteen studies (n=16) to be included. The reference lists of the twenty-two studies were also examined. Although two were added from references, they were finally excluded for failing to meet the criteria. With reference to the final six studies excluded, these are listed in the appendices (Appendix 1).

Approach to systematic and meta-analysis synthesis of studies
The review was guided by the systematic approach preferred by PRISMA (Reporting Systematic Reviews and Meta-Analysis Studies (Liberati, 2009). Figure 1 illustrates the process of papers being excluded or included for the systematic review based upon the study question. This process sets a standard for the assessment and critique of health focussed studies and interventions assisting the processes for summarising evidence accurately and reliably. However, it is the case that the methods of meta-analysis are not transferable to qualitative health research for a number of pragmatic and epistemological reasons; for example, computer literature searches, statistical data and priorities in quantitative research may fail to capture forms of qualitative research which lack the appeal of more clinical protocols and interventions (Britten et al., 2002). As such, criteria for judging the quality of published research whilst contested in the past have since found established qualitative protocols for comparing studies (Britten et al., 2002). The potential audiences for viewing research through this lens include practitioners across a broad health practice background as well as policy-makers and qualitative researchers (Britten et al., 2002). Therefore, there exists several well recognised methods by which to conduct a systematic review of qualitative literature (Greenwood & Smith, 2016).

The role of meta-ethnography in qualitative research
The impetus for developing methods of qualitative synthesis has arisen from a need to complement quantitative research. This looked to gain a more complete understanding of phenomena, especially in terms of organisational processes and provision of services (Greenhalgh, 1998). Therefore a need existed to bring together isolated studies for comparison (Sandelowski et al., 1997). Meta-ethnography provides a way to compare qualitative studies accommodating induction and interpretation (Greenwood & Smith, 2016). It also can synthesise conceptual innovations such as metaphorical and emotionally relevant phenomena (Strike and Posner, 1983). It has origins in the interpretive paradigm and as such, it possesses an alternative to traditional aggregative methods of synthesis which retain qualities or concepts of the qualitative method of study it aims to synthesise.

The benefit of applying meta-ethnography to the synthesis of qualitative research and suitability for this study was informed by Noblit and Hare’s (1988) seven-step process (Table 1). Narrative literature reviews capture concepts and information in a more eclectic fashion but have in the past been criticised for being singular descriptive accounts based upon the implicit bias of the researcher (Fink, 1998). They have also been condemned for lacking critical assessment. Adopting a more systematic approach to the literature was therefore useful in order to approach a more comprehensive contemporary review of the field. This approach was particularly helpful in investigating EOD as a lesser known sub-group of dementia. Meta-ethnography has proven a sound technique for synthesising qualitative research in health studies (Paterson et al., 1998). It has been successfully employed in publications to date including: lay meanings of medicines (Britten et al., (2002); lay experiences of diabetes and diabetes care (Campbell et al; 2003); what values people seek when they provide unpaid care for an older person (Al-Janabi et al., 2008) and locating how coping experiences appear in chronic fatigue syndrome sufferers (Larun and Malterud, 2007).

[1] This definition is in keeping with Mercy (2008), excluding two other studies limiting EOD to 45-60. All others searched for the systematic review including the scoping review referred to 45-65 as the most commonly used criteria for EOD.
[2] Searches between 1998-2018 captured the advent and widespread prescription of anti-cholinesterase inhibitor treatment and linked with a key driver as laid out in the Scottish Government’s 2009 report making dementia a healthcare priority for development.

Table 1:

Click here for Figure 1: PRISMA flowchart

RESULTS

Participant and study design
The inclusion criteria sought studies spanning 1998-2018. However, the studies ranged from 2009 to 2018. The mean date was 2015. All studies were performed in Western countries (Norway-6; America-1; England-; 6; The Netherlands-1; Ireland-1 & Australia-1). Where English was not the dominant language it was widely taught and well spoken (Norway and The Netherlands). The participants were predominantly drawn from health environments or services structured to assist PwD or PwEOD such as statutory or voluntary bodies. There were a total of 229 participants after making amendments for those participants drawn from the same sample groups where multiple study authors were included. Johannessen et al., (2014) and Johannessen and Moller (2011) used the same participants. Johannessen et al., (2016) and Johannessen et al., (2017) also shared participants databases throughout the studies. Data were collected through face to face interview mostly using a semi-structured format. These were situated within the statistics of the studies quoted above; (PwEOD (4); their family members (2); both spouses (2) and dependents (8) whether still regarded as children living at home or adult children living independently elsewhere). These studies drew together the theoretical approaches to the data founded in: grounded theory (5); autobiographical life story narrative (3); phenomenological hermeneutic analysis (2); Thematic Analysis (TA) (2); qualitative semi structured interview (1); conceptual model (1); action research study (1) Interpretative phenomenological analysis (IPA) (1).

Ethnicity was referred to infrequently (n=1) and where ethnic origins were detailed, the sample groups were white/Western. Allen et al., (2009) was the only study to include 25% Asian participants within an English sample. Other studies made no attempt to refer to ethnicity and so a presumption is made that natives of the country of origin satisfied the sample cohorts. This is excepting Sikes and Hall (2017) which reported that the sample participant group was ‘mainly white, British, middle-class, participants’.

Type of dementia was not a focus except for Johannessen et al., (2017) which focused on people with fronto-temporal lobe dementia. Other data reported were related to whether participants (both PwEOD and family) were working, living at home, in studies, in a care home, retired or medically signed off work and living on retirement funds or state benefits. The source for participants overwhelmingly arose from clinical or health focused environments. This particular feature was examined in the discussion of the studies. Having noted the brief characteristics of the studies above, the following tables and sub-sections developed overall themes along with the development of the line of argument.

Click here for Table 2: Participant and study design

Drawing a line of argument from the seven step process
Noblet and Hare (1988) refer to a meta-ethnographic line of argument which emerges to articulate a larger phenomenon drawn from the data. This was achieved by following the steps. After selecting an aim and study question (steps one and two), the studies were read to fulfil step three. This was followed by populating the tables with typical broad characteristics (Table 2). Investigation of experiences were then described (Table 3). Following this, steps four, five and six produced more concepts (Table 4) and themes (Table 5) were populated taking care to ensure the data remained true to the original studies. Step seven provided for a discussion through the line of argument of what fresh data was discovered.

Click here for Table 3: Investigation of experiences

Overall themes
By the time Table five was completed at stages five and six in accordance with Noblit and Hare’s seven step process, new data emerged to realise conceptual themes crystallised into themes which formed the expression of the new information. The expression of the synthesis followed the tables discussed theme by theme.

Click here for Table 4: Conceptual themes

Conceptual themes and Schultz’s first and second order constructs
The table below concluded the development of the line of argument. Noblit and Hare adopted Schutz’s notion of first and second order constructs assisting the progression of themes. Schutz utilised the term first-order construct in referring to the everyday constructs and understandings of ordinary lay people. The second-order construct referred to those constructs familiar to social science researchers. The table below (Table 5) reveals how the themes took their place within the constructs drawn in accordance with Schutz’s terms. The final themes that arose were: i) biographical disruption ii) diagnosis, iii) losing life, friends and competences, iv) liminality and chronicity, v) stigma, and vi) coping with cautious optimism. The table below finalised the creation of new concepts which are followed by discussion of the themes.

LINE OF ARGUMENT

PwEOD – Biographical disruption
A prevailing theme within eleven of the synthesised sixteen papers reflected disruption of future life plans for PwEOD and their families (Pipon-Young et al., 2011; Hall and Sikes,