Beyond Diagnosis: Exploring Residual Autonomy in Dementia Through a Systematic Review
Abstract
1. Introduction
1.1. Cognition and Autonomy: A Complex Relationship
1.2. ADLs as a Measure of Functional Autonomy
1.3. ADL Classification and Progression of Decline
1.4. Study Aims and Influencing Factors
2. Materials and Methods
2.1. Search Strategy and Inclusion Criteria
2.2. Study Selection and Quality Assessment
2.3. Measurement
3. Results
3.1. Findings in Non-Institutionalized Settings
3.2. Findings in Institutionalized Settings
4. Discussion
4.1. Influence of Living Context on Autonomy and Cognitive Functioning
4.2. Variability in Functional Decline and Limitations of Standardized Assessment
4.3. Psychological and Social Determinants of Autonomy
4.4. The Role of Daily Relationships, Home Support, and Innovative Living Solutions
4.5. Clinical Implications, Limitations, and Future Directions
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
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References | Objective | Sample | Tools | Context | ADL Results | Dementia Severity | Preserved Autonomies |
---|---|---|---|---|---|---|---|
Aske, 1990 [21] | To compare scores obtained through the Mini-Mental and ADL autonomy scales | 37 subjects | MMSE ADL | Rehabilitation center for dementia patients | There is a negative correlation between Mini-Mental and ADL scores. That is, the higher the Mini-Mental score, the lower the ADL score. | Missing | NO autonomies |
Votruba et al., 2015 [19] | To investigate the relationship between self-reported depressive symptoms and caregiver-perceived depressive symptoms with ADLs | 71 subjects | MMSE WMS-III GDS-15 ADL IADL | Institutionalized | Depressive symptoms were associated with worse performance on IADL measurements. | Mild dementia (mean MMSE = 19.86) | NO autonomies |
Tanaka et al., 2020 [22] | To identify clinical factors influencing ADLs at baseline and after 6 months | 131 subjects | PSMS MMSE CTSD | Hospital setting (institutionalized) | Only cognitive function assessed by CTSD at baseline was associated with ADLs. | Mild to moderate dementia: 38 patients; severe dementia: 93 patients | NO autonomies |
Ashizawa et al., 2021 [23] | To evaluate the impact of Alzheimer’s disease severity on ADLs, QoL, and care costs in Japanese elderly care facilities | 287 subjects | EQ-5D-5L BI MMSE | Institutionalized | With worsening AD severity, BI scores significantly decreased. | Mild: 53 patients; moderate: 118 patients; severe: 116 patients | NO autonomies |
Riccio et al., 2007 [24] | To assess whether decline in cognitive functions is associated with functional deterioration | 47 subjects | ADL IADL MMSE CGA | Institutionalized | MMSE was significantly correlated with dependence in ADLs. | Severe dementia (MMSE 0–9): 5 patients; moderate dementia (MMSE 10–29): 23 patients; mild dementia (MMSE 20–30): 19 patients | NO autonomies |
Ikezaki et al., 2020 [13] | To examine the relationship between global cognitive functions, neuropsychiatric symptoms, and IADLs in patients with mild AD | 230 subjects | ADAS-Jcog FAB GDS-15 ADL MMSE NPI CDR | Hospital setting (non-institutionalized) | Apathy on NPI was associated with numerous IADL elements. Preserved autonomies in men were phone use (95.8%), transportation (94.4%), financial skills (94.4%). In women, phone use (99.4%), housekeeping (91.8%), laundry (92.5%), transportation (83.6%), financial skills (90.6%). | All patients scored ≥ 21 on MMSE (mild Alzheimer’s) | YES autonomies |
Takechi et al., 2012 [18] | To analyze the decline of different types of ADLs (BADL, IADL, and AADL) | 39 subjects | MMSE ADL IADL AADL BADL | Hospital setting (non-institutionalized) | Physical ambulation and feeding remained preserved. Mean MMSE score: 22.3 ± 3.4. | Missing | YES autonomies |
Andersen et al., 2004 [25] | To identify key factors influencing QoL related to health in dementia patients | 244 subjects | CDR MMSE ADL EQ-5D | Non-institutionalized | Overall, 16% classified as dependent, 84% classified as independent in ADL performance. | Mild: 140 (57.4%); moderate: 74 (30.4%); severe: 30 (12.3%) | YES autonomies |
Gillioz et al., 2009 [16] | To evaluate characteristics of patients in severe stage of Alzheimer’s disease | 126 subjects | MMSE SIB ADL IADL MNA | Non-institutionalized (outpatient) | Overall, 6.5% were totally independent in BADLs, 71% were completely independent in mobility, 53.2% in feeding, 46.8% in toileting, and 41.1% in continence. Mean MMSE score: 7.0 ± 2.2. Mean SIB score: 69.7 ± 16.9. | Missing | YES autonomies |
Tabira et al., 2024 [26] | To assess compromised and intact IADLs with severity of cognitive decline in elderly with Alzheimer’s disease | 115 subjects | MMSE IADL | Non-institutionalized | Use of transportation means, financial management, telephone use, and medication management were preserved and independent of cognitive decline. | Missing | YES autonomies |
Shimokihara et al., 2022 [14] | To clarify characteristics of processes for BADLs with severity of cognitive decline in elderly with dementia | 143 subjects | MMSE PADA-D | Non-institutionalized | Some ADLs remained preserved. Feeding: 94.8%. Toileting: 87.2%. Dressing: 73.6%. Personal care: 65.2%. Mobility: 81.4%. Bathing: 72.8%. | Mild: 53 patients; moderate: 73 patients; severe: 17 patients | YES autonomies |
Potashman et al., 2023 [27] | To evaluate the measurement properties of ADCS-ADL-MCI in subjects with cognitive decline | 769 subjects | ADCS ADL MMSE | Non-institutionalized | At baseline, about two-thirds of the individual items showed ceiling effects, with over 80% of patients performing daily activities “without supervision”. By month 36, most of these ceiling effects persisted, though to a lesser extent, which were no longer evident for items 1, 10, and 11. | Mild cognitive impairment: 58% (MMSE = 27,7) | YES autonomies |
Liu et al., 2007 [28] | To explore the activities of daily living ADL performance profile of community-living people with dementia and to investigate its relationship with dementia severity | 86 subjects | CDR IADL | Non-institutionalized | Subjects were generally able to perform most basic BADLs, including personal care, feeding, dressing, and using the bathroom. For basic IADLs, most subjects were able to perform basic instrumental daily activities ADLs in the household, such as home maintenance and laundry. | Both the median and mode score of the CDR was 1.0 (range 0.5–3.0), indicating that the majority of the subjects had mild dementia | YES autonomies |
Giebel et al., 2014 [29] | Analyze the impact of deterioration in basic daily activities of living at different stages of dementia | 1026 subjects | MMSE ADL | Non-institutionalized | Bathroom use, transfer, and feeding remained relatively preserved during all stages of dementia. | Mild dementia (n = 263); moderate dementia (n = 521); severe dementia (n = 242) | YES autonomies |
Reference (Author, Year) | Severity of Dementia | Context | Preserved Autonomy |
---|---|---|---|
Aske, 1990 [21] | Missing | Institutionalized | No |
Andersen et al., 2004 [25] | Mild: 140; moderate: 74; severe: 30 | Non-institutionalized | Yes |
Riccio et al., 2007 [24] | Severe: 5; moderate: 23; mild: 19 | Institutionalized | No |
Gillioz et al., 2009 [16] | Severe (mean MMSE = 7.0) | Non-institutionalized | Yes |
Takechi et al., 2012 [18] | Missing | Non-institutionalized | Yes |
Votruba et al., 2015 [19] | Mild (mean MMSE = 19.86) | Institutionalized | No |
Ikezaki et al., 2020 [13] | Mild (MMSE ≥ 21) | Non-institutionalized | Yes |
Tanaka et al., 2020 [22] | Mild–moderate: 38; severe: 93 | Institutionalized | No |
Ashizawa et al., 2021 [23] | Mild: 53; moderate: 118; severe: 116 | Institutionalized | No |
Shimokihara et al., 2022 [14] | Mild: 53; moderate: 73; severe: 17 | Non-institutionalized | Yes |
Potashman et al., 2023 [27] | Mild cognitive impairment (58%) | Non-institutionalized | Yes |
Tabira et al., 2024 [26] | Missing | Non-institutionalized | Yes |
Liu et al., 2007 [28] | Mild dementia | Non institutionalized | Yes |
Giebel et al., 2014 [29] | Mild dementia (n = 263); moderate dementia (n = 521); severe dementia (n = 242) | Non institutionalized | Yes |
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Anselmo, A.; Corallo, F.; Pagano, M.; Cardile, D.; Marra, A.; Maresca, G.; De Luca, R.; Alagna, A.; Quartarone, A.; Calabrò, R.S.; et al. Beyond Diagnosis: Exploring Residual Autonomy in Dementia Through a Systematic Review. Medicina 2025, 61, 895. https://doi.org/10.3390/medicina61050895
Anselmo A, Corallo F, Pagano M, Cardile D, Marra A, Maresca G, De Luca R, Alagna A, Quartarone A, Calabrò RS, et al. Beyond Diagnosis: Exploring Residual Autonomy in Dementia Through a Systematic Review. Medicina. 2025; 61(5):895. https://doi.org/10.3390/medicina61050895
Chicago/Turabian StyleAnselmo, Anna, Francesco Corallo, Maria Pagano, Davide Cardile, Angela Marra, Giuseppa Maresca, Rosaria De Luca, Antonella Alagna, Angelo Quartarone, Rocco Salvatore Calabrò, and et al. 2025. "Beyond Diagnosis: Exploring Residual Autonomy in Dementia Through a Systematic Review" Medicina 61, no. 5: 895. https://doi.org/10.3390/medicina61050895
APA StyleAnselmo, A., Corallo, F., Pagano, M., Cardile, D., Marra, A., Maresca, G., De Luca, R., Alagna, A., Quartarone, A., Calabrò, R. S., & Cappadona, I. (2025). Beyond Diagnosis: Exploring Residual Autonomy in Dementia Through a Systematic Review. Medicina, 61(5), 895. https://doi.org/10.3390/medicina61050895