Table S1: Characteristics of included studies
Author*, year
Country
Perspective
Recruited
from
Number
Age PWD
participa
(mean &
nts**
range where
given)
Data collection
methods
Methodology†
Adams 1994
UK
Adams 2006
US
Carers
PC
6
Diary analysis
E & GT
Carers
MC
20
Interviews
P & GT
Adamson 2001
UK
Carers
PC
30
Interviews
E&GT
Bamford 2000
UK
PWD, Carers
21
Focus Groups,
informal group
discussions
NS
Banningh 2008
Netherlands
PW MCI
Centre for
older people
with MH
problems
MC
Interviews
GT
Beard 2004
US
PWD
Diagnostic
centre
13
NS
Focus Groups,
observation
P & GT
Beard 2008
US
PWD, PW MCI
Neurology
clinic, psych
clinic, Alz Soc
40
M = 71 (all
over 65)
Interviews, Focus
Group
E
Beard 2009
US
PW MCI or early
NS
stage dementia,
carers
PWD
Day centre for
younger PWD
85
77% over 56
Focus Groups
GT
14
M 59 (R 4166)
Interviews
GT
Benbow 2009
UK
Carers
8
Narratives
NS
Blieszner 2007
US
People with
MCI, Carers
146
Interviews
GT
Beattie 2004
UK
Consumer grp
(Royal College
of Psychiatry)
MC
60-90+
8
Analysis†
Principle experiences
explored
Case study
Reliability Usefulnes
Emotional experience of
informal caring
Thematic analysis Caregivers subjective
experience of early
cognitive changes
Constant
Experiences of carers of S
comparative
Asian & African Caribbean
analysis
descent
Thematic analysis Desired outcomes of
community care
Low
Low
Medium
High
Low
High
High
High
NS
How PWMCI experience &
cope with their cognitive
decline
Constant
Impact of being diagnosed
comparative
with early AD on identity
analysis
construction
Constant
Examine dynamics &
comparative
context of focus groups
analysis
for people diagnosed with
dementia or MCI
Constant
Attitudes towards aging
comparative
well from perspective of
analysis
PWD & MCI
Comparative
Experiences, care needs
textual analysis
and views on services of
younger PWD
Thematic analysis Describe narratives arising
from consumer group
Medium
Medium
High
High
High
High
Medium
High
Low
High
Low
Medium
Thematic analysis Application of the theory
of ambiguous loss to
couples with MCI
High
Medium
Boise 1999* (Connell Carers
2004)
US
Bowes 2003
PWD, Carers
UK
Bruce 2000
Australia
Carers
Butcher 2001
US
Carers
Byszewski 2007*
(Aminzadeh 2007)
Canada
PWD, Carers
Cahill 2004
PWD
Norway, Finland,
Ireland and Lithuania
Cahill 2008
Ireland
PWD, Carers
Clare 2002a* (Clare
2002b, 2003a,
2003b)
UK
PWD, Carers
Clare 2004
UK
PWD, Carers
Clare 2005
UK
Corner 2006
UK
PWD
Cotrell 1992
US
Carers
PWD, Carer
MC
53
Focus Groups,
questionnaire
NS
Via
professionals
& community
grps
PC
8
Case studies
E
24
Interviews,
questionnaire
NS
Radio
advertising &
word of
mouth
Geriatric day
hospital
(similar to
MC)
Health care
professionals
& service
providers
MC
103
Unstructured
interviews
P
NS
Thematic analysis Explore factors which
Low
delayed families in seeking
diagnosis
Thematic analysis Experiences of S Asian
Low
families of service support
Low
Thematic analysis Access to community
Low
support & to determine
potential barriers
Secondary
Lived experience of caring Medium
phenomenologica
l data analysis
Low
High
Medium
60
M 82, R 71-92) Interviews, focus
group
NS
Constant
comparative
analysis
Process of dementia
disclosure
High
High
92
M 76, R 54-97) Interviews
NS
NS
Impact of assistive
technology, quality of life
Low
Low
56
M 73, R 55-89) Interviews
NS
Medium
Medium
MC, &
caseloads of
clin psychol
and Alz Soc
worker
MC
24
M 71, R 57-83 Interviews
P
Thematic analysis Expectations &
experiences of first
appointment at memory
clinic
Interpretive
Ways PWD try to cope
phenomenologica with changes
l analysis
High
High
20
R 52-83
Voice relational Voice relational Ways couples use talk to
analysis
analysis/conversa construct an account of
tional analysis
diagnosis
High
High
MC
12
M 71
Recorded
conversation
between PWD &
partner
Interviews
High
MC, Old age
psych, Alz Soc,
day centres
Alz Soc
3
M 65
Interviews
Case studies
Early stage dementia using High
temporal framework
Psycho-social implications Low
for PWMCI
Interviews
NS
Focus on emotional
state/changes in early
Low
5
P
IPA case study
analysis
Constant
comparative
analysis
Thematic analysis
Low
Medium
stage dementia
Davis 2011
USA
Deb 2007
UK
Derksen 2006*
(Derksen 2005,
vernooij 2006)
Netherlands
De Witt 2010*
De Witt 2009
Canada
Duggan 2008
UK
Duggleby 2009
Canada
Frank 2006
US and UK
Gillies 2000
UK
Gilmour 2003
UK
Gilmour 2005
New Zealand
Hain 2010
US
Harman 2006
UK
Harris 1999
US
Harris 2004* (Harris
2009)
US
Hellstrom 2005
Sweden
Carers
Recruited
from RCT
Old age psych
40
Interviews
NS
Content analysis
24
NS
Not stated
MC
36
M 71
Interviews, Focus
Groups
Interviews
GT
Health and
social services
8
R 58-87
Interviews
Old age
psychiatry
Carers
Home-care
co-ordinators
PWD (US&UK), Study Centre
People with MCI neurology/
(US&UK),
geriatric
Carers(US)
psychiatrist
PWD
Health and
social services
PWD, Carers
Sub-sample
from previous
study
PWD
Alz Soc
36
R 71-84
Carers
Memory &
wellness
centre
Alz soc
Carers
PWD, Carers
PWD
PWD, Carers
PWD
PWD, Carers
PWD
(US),people
with MCI (US),
Carers(UK)
PWD, Carers
17
Low
Medium
Medium
Medium
Constant
comparative
analysis
Analysis of caregiver
burden
Carers perspectives of
symptoms
Impact of disclosure of
diagnosis on PWD &
partner
High
High
P
IPA
Meaning of living alone
High
Medium
Interviews
GT
GT
Medium
Medium
Interviews
GT
GT
Perspectives on outdoor
environment
Experience of hope
High
Medium
67
M – MCI 72,
AD 77
Focus Groups
NS
Content review
Identify key aspects of the Low
impact of MCI & mild
probable AD
Low
20
R 64-89
Interviews
E
Perspectives of PWD
Low
Medium
22
M 83, R 74-93 Interviews
NS
Line by line
coding
Template
approach
Concepts of risk in PWD
living alone
Low
Low
9
R 56-79
Interviews
NS
High
High
10
Interviews
P
High
High
9
M 65, R 58-76 Interviews
P
Medium
High
Alz Soc
32
M 70, R 54-84 Interviews
GT
High
High
Alz assoc &
dementia
advocacy grp
38
USA M 56, UK Interviews, Focus
R 40-60
Groups, online
interview
GT
Thematic analysis Experience of living with
memory loss
Descriptive
What matters most to
phenomenologica carers
l analysis
IPA
Self regulation model of
illness behaviour
GT
Concept of self in early
stage dementia
Based on Glaser Unique challenges of
& Strauss
younger people with
dementia & families
Medium
High
MC
40
M 77, R 65-84 Interviews
P
Constant
comparative
analysis
High
High
Experience of dementia
over time, impact on
relationships
Hinton 1999* (Fox
1999, Hicks 1999,
Ortiz 1999)
US
Carers
7
Interviews
NS
Narrative analysis African American, Chinese Medium
American, Irish American,
Latino caregivers
High
Carers
Variety of
health, social
services,
voluntary
agencies
PC
Hinton 2004
US
39
Interviews
Narrative
approach
Pathways to diagnosis,
help-seeking patterns &
experiences across 3
ethnic groups
Medium
Medium
Holst 2003
Sweden
Howorth 2003
UK
Hulko 2009
Canada
PWD
Old age psych
11
NS
Oral histories
Biographies
Coding,
developed
typology of
pathways to
diagnosis
Biographical
Meaning of everyday life
Low
Medium
PWD, Carers
Old age psych
64
NS
Interviews
NS
NS
Retention & loss of insight. Medium
Medium
PWD, carers
16
M 77, R 74-87 Interviews,
observation
GT
Constant
comparative
analysis
Relationship between
experience & race,
ethnicity, class & gender
High
Hutchings 2010, UK
PWD, Carers
Hospital
outreach
programme &
Alz Soc
MC
23
R 65-8R 46865
Thematic
framework
approach
Constant
comparative
analysis
Hutchinson 1997
US
PWD, Carers
Day care
centre
28
NS
Awareness
context theory
Jansson 2001
Sweden
Jutulla 2007* (Jolley
2009)
UK
Katsuno 2005
US
PWD, Carers
MC
16
Focus Groups,
observation, field
notes,
autobiographical
account
M 75, R 71-85 Observation
The lived experience of
High
CHEI users and the
perceived impact of their
treatment
Social interaction issues in Low
early probable AD
GT
Content analysis
Carers
From previous
study
15
Interviews
NS
PWD
Day care
centre
23
M 79, R 66-91 Interviews
NS
Keady 1999
UK
PWD
MC
15
R 72-84
Interviews, field
notes
GT
Koppel 2007
UK
PWD, Carers
(interviews not
analysed)
MC
6
M 76
Interviews
P
Interviews, focus
groups
Patterns of elderly care
giving
Thematic analysis Asian carers experiences
of services
Constant
comparative
analysis
Constant
comparative
analysis
IPA
Medium
High
Medium
Medium
Low
Medium
High
Quality of life, personal
Low
experiences & reactions to
negative view of dementia
Coping behaviour, help
Medium
seeking
Medium
Experience of developing
memory difficulties
Medium
Low
High
Kuo 2010
Taiwan
Carers of people
with MCI
Laakkonen 2008
Finland
10
PWMCI M 75, Interviews
Carer M 50.8
GT
Carers
63
Interviews
NS
Constant
comparative
analysis
Content analysis
Langdon 2007
UK
Lawrence 2008
UK
PWD
12
M 79, R 66-87 Interviews
P
IPA
32
Interviews
GT
Constant
comparative
analysis
Experiences of caregiving
process in Taiwanese
families
Diagnosis, how
information & support
received
Other people’s reactions
to early stage dementia
Care giving attitudes &
needs of carers from 3
ethnic groups
Lawrence 2010
UK
PWD
30
M – black 76, Interviews,
Asian 77,
vignettes
white 82
GT
Constant
comparative
analysis
Leung 2011
Canada
PWD, carers
Lingler 2006
US
Livingston 2010
UK
Lu 2009
US
MacQuarrie 2005
Canada
People with MCI
MacRae 2010
Canada
Mahoney 2005*
(Cloutterbuck 2003,
Neary 2005)
US
Manthorpe 2011
Carers
MC
Community
MH teams,
and variety of
carer services
& voluntary
organisations
MC, MH
teams, day
centres,
community
MH programs
Geriatric
clinic, Alz
Society
MC
13 (6 PWD 3 in 70’s, Interviews
PWD, 7 one in 60’s
carers) and one in
50’s
12
Interviews
Medium
Low
Low
Low
High
High
High
Subjective reality of living High
with dementia-from 3
ethnic groups
High
P
Inductive
Experiences of problem
High
thematic analysis recognition and obtaining
a diagnosis
High
GT
GT- coding &
Living with diagnosis of
thematic analysis MCI
Thematic analysis Common difficult
decisions made by carers
Thematic analysis Commonalities of lived
experience
Constant
Experiences of PWD
comparative
analysis
Constant
Impact of AD on self
comparative
identity
analysis
Content analysis Cross cultural similarities
& meta-synthesis & differences of 3 ethnic
grps towards onset &
diagnosis
Constant
Experiences, expectations
comparative
and service needs of
analysis
people with memory
High
High
High
High
Medium
High
High
High
Low
High
Medium
Medium
High
High
Carers
PC, MC
89
Carers
MC
10
MC, voluntary
org
26
M 76.5, R 60- Interview
89
Hermeneutics
PWD
MC
9
R 60-85
Interview
P
Carers
Alz assoc
22
Interviews, Focus
Groups
NS
MC
53
PWD, Carers
PWD/MCI,
carers
Interviews, Focus
Groups
Interview
High
18 aged 65Interviews
79, 5 over 80,
3 under 65
GT
P
Drew upon GT
methods
problems and their carer
Mason 2005
UK
People with MCI
Menne 2002
US
PWD
Mok 2007
Hong Kong
PWD
Monzin-Cook 2006
UK
PWD, Carers
Moreland 2001,
UK
Carers
Moreland 2003
UK
Mukadam 2011
Carers
Murray 1999
14 EU countries
Neufeld 2003
Canada
Carers (20 from
each country)
Carers
Nygard 1998
Sweden
O’Connor 1999
PWD
Ostwald 2002
US
PWD
Pearce 2002
UK
Perry 2002
PWD, Carers
Carers
Carers
Carers
Day centre
older adults
11
M 79, R 72-86 Interviews, analysis P
of video footage
Neurology &
Alz dis Centre
support grp
Community
rehabilitation
network
MC
6
M 71.7, R 57- Interviews
88
15
R 56-80
96
M 76.7, R 66- Interviews
87
Housing
associations,
churches,
voluntary grps
Voluntary
grps, churches
PC
20
Interviews
NS
19
Interviews
NS
18
Interviews
MC
280
Interviews
Adverts in
community
newsletters,
health care
agencies
In-pt
diagnostic unit
Community
support
service
organisations
Participants
from previous
study
MC
8
Interviews
NS
38
2
Mid 50s
Interviews,
observation
P
P
IPA, behavioural
interactional
codes
Strauss, A (1987),
Qualitative
analysis
Line by line
coding
Mutual support processes Low
Medium
Day to day activities
Medium
Medium
Living & coping amongst
older Chinese people
Medium
High
High
High
Low
High
Low
High
Low
High
Low
Medium
Low
High
High
High
IPA
Understanding about
dementia before
attending memory clinic
Thematic analysis Service experiences of
BME groups
Thematic analysis Service experiences of
BME groups
GT
Coding
Effect of culture and
ethnicity on help seeking
for dementia symptoms
GT
Content analysis Comparison of subjective
experience across Europe
Symbolic
Thematic content Non-support for care
interactionalism analysis
givers
Interviews
P
IPA
14
Interviews
Discourse
analysis/case
study
56
M 77.6, R 47- Interviews
97
NS
Detailed longitudinal case High
studies
Discourse analysis Interface between living
High
with memory impaired
spouse & use of formal
support services
Thematic analysis Losses, feelings, coping
Low
40
M 75
Interviews
P
IPA
Interviews
NS
Constant
How diagnosed men deal Medium
with onset of disease
Strategies used by spouses Low
High
Medium
Medium
Phinney 1998
Canada
Phinney 2006*
(Phinney 2002,
Phinney 2003,
Phinney 2007)
Canada
Pollitt 1989
UK
PWD, Carers
research
centre
Research
centre &
support grp
10
R 75-89
16
R 64-88
PC
34
Post 2001
USA
PWD, carers
Alz assoc
17
M 71
Pratt 2003* (Pratt
2001)
UK
Preston 2007
UK
Quinn 2008
UK
Roberto 2011
USA
PWD
PC, MC
24
PWD
MC
12
R 44-78 (11
Interviews
under 65 and
13 over)
M 71, R 58-81 Interviews
Carers
MC
34
Interviews
People with MCI
and their carers
MC
Robinson 1997*
(Robinson 1998)
Sweden
Robinson 2005
UK
People with MCI
MC
PWD, Carers
MC
18
M 77, R 65-85 Interviews
Samuelsson 2001
Sweden
Seabrooke 2004
UK
Shaji 2003
India
Carers
Group housing
8
Interviews
Carers
Voluntary grps
7
Carers
NS
17
Smith 2001
PWD, people
MC
40
PWD, Carers
Carers
Interviews,
observation
Interviews
NS
Interviews
NS
Focus Groups
NS
High
Low
High
Low
Medium
NS
High
High
P
IPA
Coping strategies
Medium
High
P
IPA
Medium
High
GT
Content analysis
Daily experience &
accessing support
Impact of memory
changes on family
dynamics
High
High
P
Pre-diagnosis
Medium
High
NS
Hermeneutical
/Phenomenology
approach
Interpretive
phenomenologica
l analysis
Content analysis
Interviews, Focus
Groups
Interviews
GT
Content analysis
High
NS
Interviews
NS
Constant
comparative
analysis
Inductive
Service needs of Asian
Medium
older people
Care arrangements,
Medium
attitudes, sources of strain
Lay understanding of
Low
P
NS
High
Perceptions & responses
to deterioration in
intellectual function
Thematic analysis Views on impact of
cognition-enhancing
medication on quality of
life
Thematic analysis Impact of social context
168 (56 PWMCI M
Interviews
PWMCI, 76.5, primary
112
carer M 66.8
carers)
8
Interviews
Median, AD
P
comparative
to preserve personhood of
analysis
partner
Thematic analysis Living with AD & what it
Medium
means
Interpretive
How family members
High
phenomenologica support meaningful
l analysis
activity for PWD
Psychological reactions to High
diagnosis in couples
High
Care giving for elderly
Medium
Low
Low
Low
Canada
with MCI,
Carers
PWD, Carers
MC
40
Sterritt 1998
US
Carers
NS
9
Svanstrom 2004
Sweden
Teel 2003
US
PWD, Carers
PC, MC
10
Alz assoc
Participant
approached
researcher
PC
Steeman 2007
Belgium
Carers
Todres 2006* (Galvin Carer
2005)
UK
Van Dijkhuizen 2006 PWD, Carers
UK
(not reported)
Vellone 2002
Italy
Watkins 2006
UK
Werezak 2002
Canada
Carers
Westius 2009
Sweden
Wolverson 2010
UK
PWD
PWD
PWD
PWD
85, no AD 49
reasoning
R 69-91
Interviews
GT
NS
R 73-80
Interviews, openended
questionnaires
Interviews
14
Interviews
NS
1
Life-world
descriptions
P
P
18
M 78, R 70-86 Interviews
P
Medical
centre
Psychotherapy group
Not clear
26
Interviews
P
MC, day care
centre
MC
1
M 76
Focus Groups
NS
6
R 61-79
Interviews
GT
21
R 73-89
Interviews
P
10
M 81.8, R7287
Interviews
P
* = primary reference (associated references in brackets)
** PWD/MCI and carers only, † as reported by study authors
PC = primary care, MC = memory clinic, MH = mental health
GT = Grounded theory, E = ethnography, P= phenomenology, NS = not stated
diagnostic information
Grounded theory What it is like to live with
& narrative
early stage dementia
research
Thematic analysis Cultural attitudes, beliefs
& values of African
American carers
Phenomenologica Lived experience of
l
dementia in couples
Constant
Barriers to recognition &
comparative
treatment
analysis
Phenomenologica Carer experience post
l narrative
diagnosis
analysis
IPA
Gender differences in
coping strategies &
appraisal
Phenomenology Italian family members
experiences
Stiles et al
Changes occurring during
psychotherapy group
Constant
Learning to live with
comparative
memory loss
analysis
Hermeneutical
Life story
phenomenology
IPA
Subjective experience of
hope
High
High
Low
Low
Medium
Medium
Medium
High
Medium
High
Medium
High
Low
Medium
Medium
Medium
Medium
High
Low
Low
High
Medium