Testsökningar enligt Rumseys (2008) modell för att hitta relevanta

sökord att bygga den slutgiltiga sökningen på. Bilagorna visar hur processen gällande att finna relevanta sökord har gått till. Sökord kombinerades på olika sätt för att försöka generera ett resultat med relevanta artiklar som passade till syftet men även en rimlig mängd artiklar att utgå från.

PUBMED Sök nr. Sökord Träffar #28 (#25 OR #7 OR #20 OR #21) AND (#19) 8,911 #27 (#17 OR #18) AND #20 106 #26 #25 AND #11 169 #25 Narration (Mesh) 8730 #24 (#22) AND (#4 NOT #23) 31 #23 Caregivers (Mesh) 38289 #22 (#19) AND #20 AND #21 673 #21 Coping (fritext) 168,774 #20 Experienc* (fritext) 1 150 685 #19 #17 OR #11 OR #18 169 224 #18 “Early onset dementia“ (fritext) 6699 #17 “Young onset dementia” (fritext) 1378 #16 #15 AND #4 AND #11 2149 #15 Adaptation, psychological (MESH) 129,199

#14 #11 AND #2 AND #4 228 #13 #11 AND #2 AND 3 22 #12 #11 AND #2 AND #3 AND 4 22 #11 Dementia (MESH) 170,440

#10 #6 AND #7 AND #8 AND #9 107 #9 Humans (fritext) 19,726,200

#8 Quality of life (fritext) 421,197

#7 Life Change Events (fritext) 29,429

#5 #1 AND #2 AND #3 AND #4 35

#4 Humans (MESH) 18,961,031

#3 Quality of life (MESH) 202,754

#2 Life Change Events (MESH) 261,472

#1 Neurocognitive disorders (MESH) 261,472

CINAHL

Sök nr Sökord Träffar S26 S23 OR S2 OR S18 OR S19 AND S17 7138 S25 S15 OR S16 AND S18 101

S24 S1 AND S23 383

S23 Narratives (subject heading) 8730 S22 S17 AND S18 AND S19 AND (S4 NOT S21) 158 S21 Caregivers (subject heading) 36 356 S20 S17 AND S18 AND S19 460

S19 Coping 59 122

S18 Experienc* 472,187 S17 S1 OR S15 OR S16 75 008 S16 Early onset dementia 386 S15 Young onset dementia (fritext) 187 S14 S13 AND S1 AND S4 537 S13 Adaptation, psychological (subject heading) 34 920 S12 S1 AND S2 AND S4 297 S11 S1 AND S2 AND S3 46 S10 S6 AND S7 AND S8 AND S9 0

S9 Human (fritext) 2 468 203 S8 Quality of Life (fritext) 199,651 S7 Life Change Events (fritext) 8532 S6 Neurocognitive disorders (fritext) 995

S5 S1 AND S2 AND S3 AND S4 30

S4 Human (subject heading) 2,295,534 S3 Quality of life (subject heading) 123 977 S2 Life change events (subject heading) 51 034 S1 Dementia (subject heading) 74 914

PSYCINFO Sök nr Sökord Träffar S29 (S26 OR S2 OR S21 OR S22) AND (S20) 7078 S28 (S18 OR S19) AND S21 307 S27 S26 AND S7 169 S26 Narratives (thesaurus) 20,594 S25 S23 AND S4 AND S5 NOT S24 116,543

S24 Caregivers 29556

S23 S20 AND S21 AND S22 425 S22 Coping (fritext) 92,701 S21 Experienc* (fritext) 724,687 S20 S18 OR S19 OR S7 79,940 S19 Early onset dementia (fritext) 2784 S18 Young onset dementia (fritext) 1158 S17 S16 AND S4 AND S5 AND S7 0 S16 Adaptation, psychological (thesaurus) 17,978 S15 S7 AND S2 AND S4 AND S5 5 S14 S7 AND S2 AND S3 19 S13 S9 AND S10 AND S11 AND S12 7

S12 Human (fritext) 4,314,505 S11 Quality of life (fritext) 119,878 S10 Life Change Events (fritext) 23530 S9 Neurocognitive disorders (fritext) 5226

S8 S7 AND S2 AND S3 AND S4 AND S5 0 S7 Dementia (thesaurus) 79,099 S6 S1 AND S2 AND S3 AND S4 AND S5 0 S5 Human males (thesaurus) 27,370 S4 Human females (thesaurus) 91,775 S3 Quality of life (thesaurus) 58,196 S2 Life experiences (thesaurus) 31,316 S1 Neurocognitive disorders (thesaurus) 5033

Bilaga 5. Slutgiltig sökning i databaser

PUBMED Sök nr

Sökord Träffar Begränsningar

#8 (#1 OR #2 OR #3 OR #4) AND #5 369 årtal 2000-2020 #7 (#1 OR #2 OR #3 OR #4) AND #5 410 #6 #1 OR #2 OR #3 OR #4 8366 #5 experienc* 1 153 926 #4 EOD 922 #3 YOD 129

#2 early onset dementia 6645 #1 young onset dementia 1363

PSYCINFO Sök nr Sökord Antal träffar Begränsningar S8 (1 OR 2 OR 3 OR 4) AND 5

262 peer reviewed, årtal 2000- 2020 S7 (1 OR 2 OR 3 OR 4) AND 5 322 S6 1 OR 2 OR 3 OR 4 3638 S5 experienc* 720 052 S4 EOD 273 S3 YOD 80 S2 early onset dementia 2757 S1 young onset dementia 1140

CINAHL Sök ID Sökord Antal träffar Begränsningar S9 (S1 OR S2 OR S3 OR S4) AND S5

112 peer reviewed, årtal 2000- 2020 S8 (S1 OR S2 OR S3 OR S4) AND S5 117 peer reviewed S7 (S1 OR S2 OR S3 OR S4) AND S5 120 S6 S1 OR S2 OR S3 OR S4 687 S5 experienc* 472,187 S4 EOD 160 S3 YOD 69

S2 early onset dementia 384 S1 young onset dementia 183

Bilaga 5. Artikelmatriser

Braudy Harris P, Keady J

Living with early onset dementia: exploring the experience and developing evidence-based guidelines for practice.

United Kingdom and United States 2004

Aim: “Explore both sides to the experience (family and people with YOD) and the unique struggles that this group encounters”

Participants: 23 persons with YOD in the United States and 15 persons in families of people with younger onset dementia in the United Kingdom.

Method: Grounded theory (by Glaser and Strauss), inductive approach focusing on two basic research questions “What are the unique challenges that persons with younger-onset dementia and families face from their perspectives?” Result: 8 themes

Quality: Medium

Carone L, Tischler V, Dening T

Football and dementia: A qualitative investigation of a community based sports group for men with early onset dementia

United Kingdom 2014

Aim: “investigate the effect of early onset dementia on individuals with the condition and their carers; examine perceptions of current levels of service provision for people with early onset dementia; and analyse the impact of the group”

Participants: 20 (5 men vid EOD, 5 carers, 5 NCFC coaching staff, 5 people organising/facilitating the sessions). Non-completion not declared

Method: Thematic analysis, interviews Result: 4 main themes

Clemerson G, Walsh S, Isaac C

Towards living well with young onset dementia: An exploration of coping from the perspective of those diagnosed

United Kingdom 2013

Aim: “to explore the specific experience of living and coping with Alzheimer's disease in younger life from the perspective of those diagnosed.”

Participants: 8 participants, 6 men, 2 women, non-completion not declared Method: Semi-structured interviews, analysed using interpretive

phenomenological analysis. Result: 4 themes

Quality: High

Johannessen A, Engedal K, Haugen P K, Nascimento Dourado M C, Thorsen

"To be, or not to be": experiencing deterioration among people with young-onset dementia living alone

Norway 2018

Aim: “to examine how people living alone with YOD perceive the course of dementia, their needs, and coping strategies, with a focus on narrating everyday life experiences”.

Participants: 10 participants, 2 participants dropped out and 1 died during the time of the study. 7 women and 3 men.

Participants, divided by gender

Method: A longitudinal study using a qualitative approach. Grounded theory Result: 8 themes

Johannessen A, Engedal K, Haugen P K, Dourado M Cn, Thorsen K Coping with transitions in life: a four-year longitudinal narrative study of single younger people with dementia

Norway 2019

Aim: “To explore how people living alone with YOD experience and cope with transitions during the progression of dementia”

Participants: 10 in total, 3 men, 7 women, 6 dropped out,(1 died, 1 had severe dementia, 3 declined further interviews, 1 was excluded because saturation was fulfilled).

Method: Longitudinal explorative narrative descriptive study. Grounded theory, modified version into a reformulated analytical method approach. Inductive and deductive approach.

Result: Two main themes Quality: High

Johannessen A, Möller A

Experiences of persons with early-onset dementia in everyday life: a qualitative study

Norway 2011

Aim: “To find out how people experience living with early-onset dementia, and to assess the implications for practice and the development of further services” Participants: 20 informants, 12 men, 8 women

Method: Grounded theory with in-depth interviews Result: 2 main categories

Mohrsen Busted L, Nielsen D S, Birkelund R

"Sometimes it feels like thinking in syrup" - the experience of losing sense of self in those with young onset dementia

Denmark 2020

Aim: “To explore and describe the experience of people having young-onset dementia”

Participants: 9 informants, 4 women, 5 men.

Method: Reflexive thematic analysis, using semi-structured interviews. The collected data were analysed using the six-stage process of reflexive thematic analysis model.

Result: 3 themes Quality: High

Rabanal L I, Chatwin J, Walker A, O’Sullivan M, Williamson T Understanding the needs and experiences of people with young onset dementia: a qualitative study”

United Kingdom 2018

Aim: “to explore the experiences and needs of people living with YOD

(younger than 65 years) and gain an understanding of the issues that impact on them.”

Participants: 14 people with YOD aged between 57 and 67 years

Method: Semistructured, in-depth interviews were audio recorded, transcribed and analysed cross-sectionally following principles of interpretative

phenomenological analysis Result: Four themes Quality: High

Roach P, Drummond N

'It's nice to have something to do': early-onset dementia and maintaining purposeful activity

Canada 2014

Aim: “Understand the experience of those living with a diagnosis of dementia focusing on the transition out of perceived purposeful activity”

Participants: 9 families and 20 participants, non-completion and gender not declared

Method: Qualitative repeated interview study with framework analysis Result: 4 themes, 2 subcategories

Quality: Medium

Sakimoto M L, Moore S L, Johnson S T

"I'm Still Here": Personhood and the Early-Onset Dementia Experience Canada

2017

Aim: “To explore the perception of personhood in younger adults with dementia”

Participants: 5 males, 1 was excluded because the dementia had progressed too far.

Method: IPA and double hermeneutic interpretation, in-depth interviews Result: 6 themes

Thorsen K, Nascimento Dourado M C, Johannessen A

Developing dementia: The existential experience of the quality of life with young-onset dementia - A longitudinal case study

Norway 2020

Aim: “To examine the experience of the quality of life with YOD as a single person”

Participants: 1 woman

Method: Longitudinal case study, based on qualitative narrative methodology, with in-depth interviews

Result: 7 themes Quality: High

van Vliet D, Persoon A, Bakker C, Koopmans R T C M, de Vugt M E, Bielderman A, Gerritsen D L

Feeling useful and engaged in daily life: exploring the experiences of people with young-onset dementia

Netherlands 2017

Aim: “Explore how people with YOD shape their daily lives to retain a sense of usefulness.”

Participants: 18 participants diagnosed with YOD, 11 males, 7 females, non- completion not declared

Method: Inductive qualitative content analysis Result: 4 themes