Priorities and Preferences of People Living with Dementia or Cognitive Impairment – A Systematic Review

Figures & data

Figure 1 Study flow chart (CONSORT). Data from ICHOM standard set for Dementia. Available from: https://connect.ichom.org/standard-sets/dementia/.²⁰

Table 1 Study Characteristics and Results Preference Studies of People with Dementia (PwD)

Area	Author/Year	Population/Country	Aim of Study	Mean Age	Study Description	n	Preferences
Symptoms, Functioning and Quality of Life
Cognitive	Raetz et al 2013^Citation27	PwD under a 24-hour care by FM or staff, USA	To identify stimuli to ↑ engagement and to ↓ negative effects and problem behavior	82 years	Paired-stimulus preference assessments	8 PwD	• The use of a single-array presentation is as effective as the use of a three-array presentation to identify preferences • For some PwD, preferences remain stable
	Wijk et al 1997^Citation21	PwD recruited from a psychiatric clinic, Sweden	To examine the ability to detect color naming/discrimination	80 years	Descriptive preference assessments	50 PwD	• Cognitive decline influenced the naming of mixed colors • preferences for colors are stable despite the disease
	McMurtray et al 2009^Citation74	Japanese PwD who presented at a memory disorder clinic, Hawaii	To determine the influence of dementia on the native speech of bilingual PwD	76 years	Language assessments	2 PwD	• A regression to the primary language of bilingual PwD may help clinicians to identify dementia
	Lombrozo et al 2007^Citation24	HA from Boston, PwD from a general hospital, USA	To examine explanatory judgments in PwD	84 years	Explanation choice task, causal-belief task	24 HA, 17 PwD	• Unlike HA, PwD prefer teleological explanations
	Halpern et al 2007^Citation23	PwD living at home, HA from a senior citizen center, USA	To explore the stability of art preferences	78 years	Comprehensive evaluation and neuropsychological tests	16 PwD, 27 HA	• Aesthetic preferences can be preserved in PwD and are not dependent on explicit memory
	Stanzani Maserati et al 2019^Citation22	PwD were recruited from to a cognitive disorder center of Bologna, Italy	To explore the emotional state of PwD through color choice preference	77 years	Lüscher colour test	121 PwD, 68 HA	• With a higher severity of the disease, auxiliary colors like violet and brown are preferred, whereas black and gray are rejected
	Motzek et al 2017^Citation53	PwD at a general acute care hospital in Dresden, Germany	To identify picture categories that are liked and easily remembered by PwD	78 years	PwD votes of preferences and the ability to recall pictures were tested	37 PwD	• A main effect of familiarity on positive votes and recall pictures was seen
Social	Feliciano et al 2009^Citation25	PwD living in 6 different long-term care settings, USA	To examine the use of stimuli in behavioral management	86 years	Preference assessment	11 PwD	• Using preferred items in behavioral management: ↓ agitated behaviors and partially ↓ depressive symptoms
	Van de Ven et al 2017^Citation28	PwD living in 23 different care networks in the Netherlands	To describe the decision-making process of PwD, shared decision-making	80 years	Qualitative study, a secondary analysis of 117 interviews	23 PwD, 44 CG, 45 Prof.	• Collaborative deliberation model is extended by engaging the network, recognizing the need for a decision, defining/ evaluating decisions, trying out alternatives …
	Lopis et al 2017^Citation54	PwD were recruited from a local memory center, France	To determine if eye contact influences the likeability/memory relating to faces in HA/PwD	81 years	Identifying faces they had previously seen during a surprise recognition test	19 PwD, 40 HA	• PwD show a positive correlation between ratings of likeability and recognition scores
Daily living	Cohen-Mansfield et al 2010^Citation30	PwD out of 7 nursing homes in Maryland, USA	To study whether activities/stimuli based on PwD interests result in more engagement than other activities	86 years	The expanded version of the self-identify question-naire^Citation75 was used to identify PwD interests	193 PwD	• PwD with current interests in art, pets, and music were more engaged with stimuli that were related to these interests than PwD without these interests
	Cohen-Mansfield et al 2009^Citation55	PwD at four nursing homes in Maryland, USA	To examine the influence of stimulus attributes on the engagement of PwD	86 years	1-on-1 interview, systematic observations via OME	69 PwD	• Preference for the work-related rather than the manipulative stimuli, preference for small rather than large blocks
	Chong et al 2012^Citation29	Australian patients	To show PwD attitudes toward physical activity	76 years	Analysis of focus groups, individual interviews	36 PwD, 14 HA	• Preferred activity program: simple/light/safe activities, ac- cessible group setting, adjusted to individual income/interest
	Mungas et al 1990^Citation76	PwD at the UC Davis Medical Center, Sacramento, USA	To compare the sweet food cravings of PwD to HA	76 years	A food preference survey	45 PwD, 43 HA	• Compared to normal controls, PwD show an increased preference for sugar and sweet foods
	Milte et al 2017^Citation32	PwD recruited from rest homes, Australia	To describe the food experience of PwD in rest homes	78 years	1-on-1 interview, focus groups with PwD and FM	19 PwD and FM	• Maintaining choice and individual preferences around food is important to PwD
	Ortega et al 2012^Citation77	PwD living at home, USA	To find the most preferred item in preference assessments	84 years	Paired-stimulus procedure to assess preferences of 4 edible and 4 leisure items	14 PwD	• A leisure activity was the most preferred in the preference assessment
	Van’t Leven et al 2019^Citation31	Dutch patients	To test how activating dyadic interventions fit the needs and preferences of PwD and CG	78 years	Qualitative design with semistructured interviews	27 PwD, 34 CG, 19 Prof.	• Five factors influenced dyad “fit”: timing, need for an activity, lifestyle, apart-or-together, and meaning of (lost) activity
Overall quality of life	Bohn et al 2018^Citation59	PwD living in long-term care facilities, Edmonton area, Canada	To study if PwD prefer emotional gratification, despite their cognitive decline	84 years	Social activity preference card-sort task	75 HA, 23 PwD	• PwD prefer emotionally meaningful ends and retain high levels of well-being
	Barrios et al 2016^Citation18	Couples of the summer 2014 HABIT session at Mayo Clinic, Rochester, USA	Ranking of behavioral outcomes of PwD, pre and post ranking after participation	77 years	Ranking task	16 dyads (PwD+HA)	• Preferences of PwD in descending order: PwDs QoL, self- efficacy, CGs QoL, depression of CG, CG burden, daily functioning, anxiety of CG
	Smith et al 2018^Citation33	HABIT program completers (2008–2014), USA	Outcome and treatment preferences of PwD	73 years	Ranking task	29 PwD, 54 spouses	• Preferences of PwD in descending order: QoL, self- efficacy, depression, CG QoL, PwDs anxiety/, CG burden
	Shelton et al 2016^Citation34	American patients recruited from the northern Ohio region, USA	To understand how actual and perceived incongruence of care preferences affects the social well-being of PwD/CG	73 years	In-depth interviews	128 dyads (PwD+CG)	• Actual incongruence for socioemotional care preferences was a predictor of greater relationship strain and worse mood for PwD, whereas perceived incongruence for socioemotional care preferences was related to lower QoL
	Reamy et al 2011^Citation35	Dyads from research/service organizations, USA	To find discrepancies in care preferences of PwD and CG	76 years	Interviews	266 dyads (PwD+CG)	• CG underestimated the PwDs values for autonomy, burden, control, family, and safety
Clinical status
Treatment	Harrison Dening et al 2016^Citation26	Dyads were identified by psychiatrists in the UK	To explore if CG and PwD have the same end-of-life care preference	79 years	Cross-sectional study, LSPQ	60 dyads (PwD+CG)	• CG had low to moderate agreement with PwD on preferences for end-of-life care treatment
	Dickinson et al 2013^Citation43	PwD identified by health-care prof. in the UK	To investigate views of PwD on ACP		Qualitative study with semistructured interviews	17 PwD, 29 CG	• 5 barriers to ACP: lack of knowledge, finding the right timing, lack of support, preference for informal plans vs written documentation, lack of choice around future care
	Cohen et al 2019^Citation45	PwD recruited from 64 Boston-area facilities, USA	To examine concordance between advance directives and proxy care preferences among PwD	87 years	A cluster randomized clinical trial	328 dyads (PwD+HA)	• The most prevalent directive: DNR, least common: antibiotics • Concordance between directives and each level of care preference: comfort, 7%; basic, 49%; and intensive, 58%
Area	Author/Year	Population/Country	Aim of Study	Mean Age	Study Description	N	Main Outcome
Diagnosis	Jung et al 2017^Citation37	PwD visiting the psychiatric outpatient clinic of Seoul University Hospital, Korea	To identify preferences regarding the disclosure of dementia and the awareness of ACP	75 years	Structured questionnaire	98 PwD, 62 FM	• A disclosure of the dementia diagnosis was favored • The majority of PwD also agreed on the necessity of ACP
	Mahieux et al 2018^Citation39	PwD attending a memory clinic in Paris, France	To report disclosure preferences of PwD	78 years	Prospective single-center study	737 PwD, 268 HA	• 85% wished to be informed of a dementia diagnosis, 7% did not want to know, and 7% were not sure
	Hellström et al 2012^Citation42	Pwd recruited from two memory clinics in Sweden	To report the understanding and experiences of PwD	71 years	Qualitative interviews	28PwD, 20 HA, 9 CG	• Regarding couples, the PwD are the ones deciding about the disclosure of their disease to others
	Elson et al 2005^Citation38	Patients over 65, UK	To report the disclosure preference of PwD	76 years	Qualitative interviews	32 PwD, 4 HA	• 2/3 did not know the cause of their memory complaint • 70% of the PwD wanted to know the diagnosis
	Bamford et al 2016^Citation40	PwD living in the UK	To assess preferences for diagnostic processes (PET and SPECT), comparison with HA	76 years	Card sorting exercise relating to importance (ranking)	68 PwD, 59 CG, 30 HA	• PwD prioritized accuracy over other scan characteristics, followed by helpful staff, comfort, and companion
	Walker et al 2017^Citation72	PwD recruited from the Alz-heimer’s association, Australia	To show PwDs experience with dementia assessment services	80 years	Qualitative, semistructured in-depth interviews	9 PwD, 7 CG	• An important contact during a dementia assessment is the GP
	Mate et al 2012^Citation36	PwD recruited by 169 GPs in Australia	To examine the predictors of QoL of PwD	84 years	Cross-sectional study	167 PwD, 1861 others	• Satisfaction with GP communication is associated with higher QoL
Sustainability of Care
Technology	LaMonica et al 2017^Citation51	PwD recruited from Healthy Brain Aging Clinic, Sydney Australia	To show PwD internet use and interest in eHealth technology	68 years	HBA E-Health questionnaire^Citation78	160 PwD, 61 HA	• PwD preferred e-health intervention: memory strategy training
	O’Philibin et al 2018^Citation52	PwD were recruited through the Join Dementia research database, UK	To explore preferences of PwD in relation to digital life story work (DLSW)	62 years	CG responded to DCE and PwD completed an online survey	67 CGs, 17 PwD	• Most preferred setting: individual one-to-one • Most preferred use of the DLSW was to share memories
	De Sant` Anna et al 2010^Citation79	PwD recruited from the Broca Geriatric Day Care Hospital in Paris, France	To compare the use of keyboard, mouse pad, and a computer screen of PwD with HA		Pilot study, qualitative and quantitative analyses	8 PwD, 10 HA	• Basic computers can be accessible to PwD under certain conditions
T-t-F-t Care	Dickins et al 2018^Citation10	PwD living in Australia	To understand how CG/FM conceptualize the issue of risk	66 years	83 semistructured interviews	53 prof., 20 HA, 7 PwD	• There is no single approach to risks that can be applied to all PwD
	Groenewoud et al 2015^Citation50	PwD living in the Netherlands	Influences on PwD health-care decisions	57 years	DCE, 11 attributes	421 PwD, 984 others	• Expertise was the most valued attribute when choosing a health-care provider
	Smebye et al 2016^Citation7	PwD living at home, Norway	To explore ethical dilemmas concerning PwD autonomy	83 years	Qualitative, hermeneutic design	9 PwD, 9 FM, 9 Prof.	• Three ethical dilemmas: PwD autonomy vs CG need to prevent harm, beneficence of FM/CG, autonomy of FM
EoL care	Ayalon et al 2012^Citation47	Couples recruited at two psychogeriatric clinics in Israel	To evaluate concordance in end-of-life preferences between PwD and their spouses	76 years	Face-to-face interviews	53 couples (PwD+HA)	• Moderate agreement regarding end-of-life care between PwD and their spouses
	Dening et al 2013^Citation48	PwD and CG attending memory assessment service, UK	To explore PwD preferences for end-of-life care	83 years	Nominal group technique	12 PwD, 11 CG	• Moderate agreement between PwD and their CG • Preferences of PwD in descending order: maintain family links and independence, feel safe, not be a burden
	Hill et at 2017^Citation14	PwD were recruited through internet databases like Join Dementia research, UK	To identify the aspects of end-of-life care for PwD	73 years	Q-methodology qualitative and quantitative techniques	14 PwD, 43 CG	• There is no universal opinion on what is important about end-of-life care for PwD
	Goodman et al 2013^Citation44	PwD living in 6 care homes in the UK	To explore how PwD discuss their priorities and preferences for end-of-life care	85 years	Exploratory, qualitative study, interviews	18 PwD	• For PwD, the experiences of living and dying in a care home are inextricably linked • End-of-life care can be improved by documenting the preoccupations, key relationships, and wishes about everyday care of PwD
	Mulqueen et al 2017^Citation49	PwD living in a residential care facility, Ireland	To explore preferences of PwD for end-of-life care	83 years	Nominal group technique	6 PwD, 6 CG	• Preferences of PwD in descending order: comfort, family presence, communication, familiar staff and surroundings

Abbreviations: ↑, increase; ↓, decrease; CG, caregiver; PwD, people with dementia; HA, healthy adults; Prof., professionals; OME, observational measurement of engagement; LSPQ, Life Support Preference Questionnaire; T-t-F-T care, time-to-full-time care.

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