Awareness in severe Alzheimer’s disease: a systematic review

Figures & data

Table 1. Search terms.

Population terms	Dement* OR Alzheimer* OR DAT
Outcome terms	Reactions OR ‘emotional expression' OR 'facial expression' OR aware* OR anosognosia OR insight OR metacog* OR meta-cog* OR self-recognition

Table 2. Study findings and conclusions (Data is organised by ascending levels of awareness).

Study	Quality rating	Sample Size^a	Method	Findings
Sensory registration
Asplund et al. (1995)	Moderate	N = 4	Facial expressions Naturalistic interpretation FACS coding system.	Simple concrete expressions most common. Complex expressions less frequent and could not be reliably interpreted. Overall agreement between the two methods was low at only 48%.
Asplund et al. (1991)	Moderate	N = 4	Pleasant (e.g. rocking, feeding) and unpleasant (e.g. stretching) conditions. 1) Facial expressions: FACS tool and simple observation; 2) Physiological responses: heart rate, skin conductance, and respiration rate.	Facial responses limited to simple movements. Unpleasant stimuli associated with increases in expression and physiological arousal. Pleasant stimuli associated with decreases in arousal and expressions.
Beach et al. (2015)	High	N = 21	Pain stimuli 1) Autonomic responses: heart rate; 2) Behavioural response 3) Subjective responses: self-report scale	Heart rate increased in response to pain stimuli. Responses were less pronounced in severe AD participants. Behavioural responses significantly higher in AD group than controls. No significant differences were found between different AD severities.
Lancioni et al. (2013)	Low	N = 7	Participants were observed and behavioural responses were categorised into active and passive. Active response involved the use of switches to control music. Passive responses included tapping and smiling.	Behavioural responses significantly increased during music conditions compared to the no music condition. Participants were able to actively use switches to control the music that was played.
Lancioni et al. (2015)	Low	N = 7	Two 5-minute sessions (one active and one passive) were completed by each participant each day. Active response involved the use of switches to control music. Passive responses included tapping and smiling.	Music increased positive behavioural responses. Two severe AD showed increased behavioural responses in the active condition compared to the passive condition. The remaining five (severe AD) participants showed no difference in responses between conditions.
Magai et al. (1996)	High	N = 77	Family visits were observed for 20 minutes. Researchers coded expressions using the maximally discriminative facial movement coding system. Family members and care staff assessed expressions with the ABQ.	Participants were able to display emotional expressions. Joy significantly decreased with AD severity. Sadness observed most often in the closing minutes while families were preparing to leave. Fear and disgust occurred almost exclusively in moderately-severe and severe AD. There were discrepancies between family member and caregiver ratings of expressions.
Pöllänen and Hirsimäki (2014)	High	N = 3	Three, 55–65 minutes, group reminiscence sessions were led by a nurse and an assistant. Verbal and non-verbal responses were transcribed from video recordings.	Participants exhibited a variety of non-verbal indicators of awareness in response to crafts including: eye-gaze; body movements; haptic responses and smelling.
Swall et al. (2015)	High	N = 5^b	10 therapy sessions with trainers and therapy dogs. Verbal and non-verbal responses were transcribed and analysed.	Interactions with therapy dogs was associated with expressions of joy, happiness and relaxation.
Yokoi et al. (2012)	Low	N = 10	Two authors observed behaviours during meal times. Behaviours were noted down and interpreted.	One participant responded to noises within one’s surroundings; Five participants showed signs of not being aware of eating but seemed aware at other times.
Performance monitoring/self-recognition
Biringer and Anderson (1992)	Moderate	N = 16	Mirror: observation of spontaneous mirror use, mirror-mark task and visible mark test. Video: Identification of four different faces of familiar and unfamiliar people.	Mirror task: 75% GDS 6 showed indicators of self-awareness; all GDS 5 showed self-awareness. Video task: 6.3% GDS 6 could correctly recognise own face, compared to 46.2% GDS 5 participants.
Biringer et al. (1988)	Moderate	N = 12	Mirror recognition task, mirror-mark test and visible mark task.	Mirror task: no GDS 7 participants showed correct mirror use, compared to all GDS 5 and 16% GDS 6 participants. Mirror-mark task: No GDS 7 participants demonstrated mark awareness while 50% of GDS 6 and 100% of GDS 5 did show awareness of the mark. Visible-mark task: 16% GDS 7 participants demonstrated mark awareness, compared to all GDS 6.
Bologna and Camp (1997)	Moderate	N = 3	Environmental cues (e.g. name tags, labels) implemented to facilitate self-recognition.	Environmental cues were able to facilitate self-recognition. Each participant demonstrated recognition in a different condition to other participants.
Grewal (1994)	Low	N = 19	Task 1: Participants were asked to indicate two of their body parts (2 points for correctly identifying both body parts, 1 point for one body part, and 0 points for none). Task 2: Participants were asked to identify their reflection in the mirror (1 point was awarded for correct response and 0 points for incorrect response).	Task 1 (Body parts): Mean scores were 2 and 0.5 for moderate and severe groups respectively. Task 2 (Reflection): Mean scores were 1 and 0.2 for moderate and severe groups respectively. Analyses scores were significantly associated with MMSE scores.
Mayhew et al. (2001)	Moderate	N = 5	Participants engaged in 15-minute conversations and were verbally prompted by nurses when necessary.	All participants correctly used personal pronouns.
Tappen et al. (1999)	Moderate	N = 23^b	Participants had 30-minute conversation with nursing home staff. Conversations were qualitatively analysed to identify evidence of self-awareness and correct use of personal pronouns.	Participants made frequent references to themselves throughout conversations and used personal pronouns correctly.
Yokoi et al. (2012)	Low	N = 10	Two authors observed behaviours during meal times. Behaviours were noted down and interpreted.	Some participants showed signs of self-awareness while other did not.
Evaluative judgement
Avondino and Antoine (2016)	High	N = 39	Level of anosognosia calculated using prediction-performance discrepancies	Anosognosia scores increased with AD severity. Mean anosognosia scores were significantly different between moderately-severe and mild participants but not between moderate and moderately-severe participants.
Conde-Sala et al. (2013)	High	N = 41	Level of anosognosia calculated using prediction-performance discrepancies in: AQ-D; Geriatric depression scale; Quality of Life-Alzheimer’s Disease Scale; MMSE; Disability assessment for dementia; GDS.	87.8% of the GDS 6 group were found to have severe anosognosia, compared to 71.2% of GDS 5 and 30.1% GDS 4 groups.
Conde-Sala et al. (2014)	High	N = 38	Level of anosognosia was determined by calculating patient-caregiver discrepancy score using the AQ-D measure.	Anosognosia scores were significantly higher in GDS 6 group compared to GDS 4 and 5 groups. Higher anosognosia scores were correlated with increased discrepancies in quality of life ratings between patients and caregivers.
Conde-Sala et al. (2016)	High	N = 46	Anosognosia determined by calculating patient-caregiver discrepancy scores using the AQ-D measure.	GDS 6 group had significantly higher anosognosia scores at all time-points than GDS 5 and GDS 4 groups. Higher anosognosia scores were associated with higher self-rated quality of life. Conversely, caregiver-rated quality of life decreased as anosognosia increased.
Mangone et al. (1991)	Low	N = 11	Anosognosia determined by patient-caregiver discrepancy scores on function (i.e. items from the physical self-maintenance activities scale and the instrumental activities of daily living scale).	Levels of anosognosia significantly increased in line with increasing GDS.
Mayhew et al. (2001)	Moderate	N = 5	Participants engaged in 15-minute conversations and were verbally prompted by nurses when necessary.	Three (60%) participants showed awareness of cognitive decline.
Pöllänen and Hirsimäki (2014)	High	N = 3	Three, 55–65 minutes, group reminiscence sessions were led by a nurse and an assistant. Verbal and non-verbal responses were transcribed from video recordings.	Craft items helped participants to acknowledge how their abilities had been altered by their condition.
Starkstein et al. (2006)	High	N = 49	Anosognosia was examined by patient-caregiver discrepancy score on the AQ-D.	Presence of anosognosia increased from 10% in very mild AD to 57% in severe AD.
Swall et al. (2015)	High	N = 5^b	10 therapy sessions with trainers and therapy dogs. Verbal and non-verbal responses were transcribed and analysed.	Therapy sessions brought back memories of previous lives. Participants were able to recognise their current situation and lost abilities.
Tappen et al. (1999)	Moderate	N = 23^b	Participants had 30-minute conversation with nursing home staff. Conversations were qualitatively analysed to identify evidence of self-awareness and correct use of personal pronouns.	Participants seemed aware of cognitive changes and indicated that they were able to monitor themselves, although often struggled to find explanations for their deficits.
Yokoi et al. (2012)	Low	N = 10	Two authors observed behaviours during meal times. Behaviours were noted down and interpreted.	Some participants recognised their cognitive decline.
Meta-representation
Mayhew et al. (2001)	Moderate	N = 5	Participants engaged in 15-minute conversations and were verbally prompted by nurses when necessary.	All participants showed social sensitivity; all showed affectional warmth; four (80%) showed they wanted to help the nurse; four (80%) could tell an autobiographical story; two (40%) initiated social contact; some showed signs of desire or will; two (40%) showed signs of humour.
Swall et al. (2015)	High	N = 5^b	10 therapy sessions with trainers and therapy dogs. Verbal and non-verbal responses were transcribed and analysed.	Participants demonstrated the ability to take the perspectives of the dogs by protecting them from harm and considering their wellbeing.
Yokoi et al. (2012)	Low	N = 10	Two authors observed behaviours during meal times. Behaviours were noted down and interpreted.	Compared to moderate AD, most of the severe AD participants lacked the ability to adhere to the dining etiquette rules of their society.

^a Sample size includes participants with both moderately-severe (e.g. GDS6) and severe (e.g. GDS7) AD, unless otherwise stated. Please see Appendix B for more information.

^b Sample size includes participants with moderate and severe dementia (i.e. MMSE: 1-18 or GDS5-7).

Figure 1. Study selection.

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