Refusals of help (sometimes called “resistance to care”) are common across the dementia journey. Understanding what’s driving the “no” is the first step to finding a safer, kinder “yes.” Below, we synthesize current evidence and translate it into practical steps caregivers can use today.
Refusing Help – Introduction & Co-existing Medical Conditions
Refusing assistance with bathing, dressing, medications, meals, or appointments is frequent in moderate-to-advanced dementia and is influenced by multiple interacting factors—medical, neurological, sensory, environmental, social, and ethical. In advanced dementia, observational research has linked refusals of care specifically to unmet needs, distress, and communication barriers rather than “stubbornness,” underscoring the need for person-centered assessment before reacting (Backhouse et al., 2022).
Medical contributors are common and modifiable. Pain, infection, delirium, dehydration, and constipation can all heighten distress and trigger refusals. A 2025 systematic review found pain is associated with numerous behavioral and psychological symptoms of dementia (BPSD)—including agitation, aggression, and care refusal—highlighting the value of routine pain screening and stepped treatment (Shi et al., 2025). Delirium superimposed on dementia is likewise linked with behavioral disruption and worse outcomes; vigilance for acute change and causes such as urinary tract infection is essential (Boltz et al., 2023; Dutta et al., 2022).
Sensory Processing and Perception
Hearing and vision loss increase cognitive load, misperception, and anxiety—fertile ground for refusals. Memory-clinic data show greater hearing loss correlates with more numerous and more severe neuropsychiatric symptoms; treating hearing loss can help (Kim et al., 2020). Recent work also associates hearing-aid use with fewer neuropsychiatric symptoms (Shankar et al., 2025), and the 2024 Lancet Commission re-affirms hearing management as a high-impact dementia care strategy (Livingston et al., 2024). Multisensory, calming environments (e.g., gentle lighting, familiar music, pleasant scents) reduce agitation and apathy in meta-analysis, supporting “sensory-smart” routines before, during, and after care tasks (Octary et al., 2025).
Practice tip: Before personal care, check hearing aids and glasses; simplify visual backgrounds; reduce noise; and layer reassuring touch and familiar cues.
Neurological and Psychiatric Conditions
BPSD—agitation, apathy, anxiety, depression, delusions, hallucinations, sleep disturbance—affect nearly all people with dementia at some point and are strongly associated with caregiver stress and care refusals (Pozzi et al., 2023). Symptoms often reflect unmet needs, cognitive misinterpretation, or pain rather than “willful” behavior. Structured approaches like DICE (Describe–Investigate–Create–Evaluate) help teams map triggers and test non-drug strategies first; DICE training improves clinician and caregiver confidence, with emerging studies evaluating clinical outcomes (Kales et al., 2014; van der Ploeg et al., 2023; Abreu et al., 2022).
When non-pharmacologic steps are insufficient and risk is high, medication may be considered cautiously. Contemporary guidance emphasizes time-limited, targeted use and ongoing review. Antipsychotics carry increased risks—including stroke, VTE, MI, pneumonia, and mortality—so they should be reserved for severe distress or danger after non-pharmacologic measures fail (Mok et al., 2024). Benzodiazepines may be considered in select scenarios but pose falls, delirium, and dependence risks; consensus guidelines recommend extreme caution (Watt et al., 2024; Bokhari et al., 2025).
Environmental Factors
Environment can either amplify threat perception or foster calm participation. Randomized trials and recent implementation studies show that home-based, biobehavioral interventions that tune tasks to abilities, simplify steps, and adjust the physical setting reduce patient upset and caregiver burden (Gitlin et al., 2010). Nature-based and environmental-cueing interventions also show promise for reducing agitation and improving function in care settings (Choe et al., 2025; “Creating harmony at home via environmental cueing,” 2025).
Practice tip: Offer care at the person’s best time of day; keep routines predictable; present one step at a time; and warm the room, towels, and water before bathing.
Social Factors
Trust and autonomy powerfully shape acceptance of help. Qualitative work with home-dwelling individuals who resisted care shows that trust-building interventions (consistent staff, respectful introductions, eye contact at eye level, collaboration rather than control) can reduce refusals (Gjellestad et al., 2022). Person-centered models that honor relational autonomy—aligning care with the person’s goals, values, culture, and language—improve engagement and dignity in daily care (Dixon et al., 2025; Bala et al., 2025). Training that is culturally responsive can strengthen caregiver competence and connection (Zhao et al., 2022).
Medications and Substances
Medication effects are frequent, fixable drivers of refusal:
- Anticholinergic burden (e.g., some bladder, allergy, and mood meds) impairs cognition and may worsen BPSD—periodically deprescribe when feasible (Nguyen et al., 2025).
- Antipsychotics: elevated risks as above—limit to severe cases, lowest dose, shortest duration, and review frequently (Mok et al., 2024).
- Benzodiazepines: mixed long-term dementia-risk data, but consistent near-term risks (falls, delirium, dependence); avoid chronic use in older adults with dementia when possible (Höfë et al., 2024; Watt et al., 2024).
- Opioids: regular or meperidine use is associated with delirium and has emerging links with worse brain health and higher dementia risk; scrutinize necessity, dose, and alternatives (Swart et al., 2017; Gao et al., 2024).
- Alcohol and other substances: screen both the person and caregivers; alcohol misuse can worsen behavioral events and safety (Chilatra et al., 2025)
Nutritional and Metabolic Factors
Malnutrition and dehydration are prevalent in dementia and correlate with behavioral symptoms and mealtime refusals; updated ESPEN guidelines recommend routine screening and multifaceted interventions (Volkert et al., 2024; van Buuren et al., 2024). Reversible metabolic issues—vitamin B12 deficiency, thyroid dysfunction, and hypoglycemia in diabetes—can present with agitation, apathy, delirium, or psychosis; testing and treating these can reduce refusals (Baik, 2024; Muhammad et al., 2024; Abdelhafiz et al., 2015).
Cognitive Functions
Impaired awareness of illness (anosognosia), common in early Alzheimer’s disease, relates to apathy and reduced acceptance of assistance; reframing discussions to protect autonomy and identity is crucial (Azocar et al., 2021). Language deficits (word-finding, comprehension) and executive dysfunction increase misinterpretation and refusal; caregiver communication training and language-focused interventions can improve participation (Thompson et al., 2023; Ripich’s FOCUSED-style communication programs).
Practice tip (“Say-Less, Show-More”): Approach from the front, use the person’s name, use short sentences, provide one-step cues, show first, then assist, validate feelings, and offer achievable choices (“blue or green shirt?”).
Safety and Other Considerations
A refusal becomes a safety issue when immediate harm is likely (e.g., refusing essential medication with high risk, unsafe wandering, fire risk at the stove). The National Institute on Aging outlines practical home-safety steps (room-by-room hazard reduction, wandering prevention, medication safety) that reduce triggers and risk during care (NIA, 2024). Capacity and consent are nuanced: adults are presumed to have capacity unless assessed otherwise, and decisions should strike a balance between autonomy and the least restrictive risk reduction (Griffiths et al., 2024). When self-neglect or abuse is suspected, Adult Protective Services (APS) can assess and connect families with supports (Administration for Community Living, 2024).
What Helps in the Moment? A Stepwise, Evidence-Informed Playbook
- Describe the behavior neutrally (what/when/where/with whom).
- Investigate causes: pain, infection/delirium, constipation, sensory needs, medication effects, unmet preferences.
- Create a plan: simplify tasks, adjust the environment, validate emotion, offer choices, time the task to the person’s best window, use comfort objects, and pair with a favorite activity or music.
- Evaluate and iterate with the care team. (Adapted from the DICE approach.)
How NCCDP Can Help
- Certified Dementia Practitioner (CDP) and Certified Alzheimer’s Disease and Dementia Care Trainer (CADDCT) programs build practical skills in person-centered communication, behavior assessment, and non-pharmacologic strategies that directly address refusals of care (e.g., cueing, validation, stepwise task breakdown, sensory-aware care).
- Certified Montessori Dementia Care Professional (CMDCP) and trainer programs provide Montessori-based methods to promote autonomy, meaningful engagement, and cooperation in daily routines—powerful antidotes to refusals.
- The Memory Care Excellence Network recognizes organizations meeting rigorous standards in dementia-capable training and practice—supporting cultures where trust, dignity, and safety reduce the likelihood of refusals.
NCCDP education is designed to turn evidence into everyday practice and to equip teams to use structured frameworks (e.g., DICE), comprehensive pain and delirium screening, and collaborative care planning with families.
Bottom Line
Refusals are messages—often about pain, fear, overload, or the need for control. When caregivers address causes (not just the behavior), adapt the environment, and protect autonomy and dignity, refusals typically soften into workable partnerships. Training and support matter: teams versed in person-centered, sensory-smart, and culturally responsive strategies help people living with dementia say “yes” more often—safely.
References:
Abdelhafiz, A. H., Sinclair, A. J., Rodríguez-Mañas, L., & Morley, J. E. (2015). Hypoglycemia in older people—A less well-recognized risk factor for frailty. Aging and Disease, 6(2), 156–167. Administration for Community Living. (2024). Final rule: Federal regulations for APS programs.
Azocar, I., Vinyoles, R., De la Fuente, J., et al. (2021). The association between impaired awareness and apathy, depression and anxiety in early Alzheimer’s disease: A systematic review. Frontiers in Psychiatry, 12, 633081.
Bala, N., et al. (2025). Developing a dementia care and support needs framework with two CALD communities: A qualitative study. BMC Geriatrics.
Baik, H. W. (2024). Mental health and micronutrients: A narrative review. Annals of Clinical Nutrition and Metabolism, 16(3), 112–123.
Bokhari, S. A., Qassem, T., Al-Ayyat, D., et al. (2025). The 2024 clinical practice guidelines on the pharmacological management of BPSD in the Arab world. Middle East Current Psychiatry, 32(2).
Boltz, M., Meurer, L. N., et al. (2023). Delirium and behavioral symptoms in persons with dementia. Innovation in Aging, 7(1), igad001.
Chilatra, J. A. H., et al. (2025). Alcohol use and abusive or neglectful behaviors among family caregivers of relatives with dementia. Journal of the American Medical Directors Association.
Choe, E. Y., et al. (2025). Effectiveness of nature-based interventions in reducing agitation among older adults with dementia: A systematic review and meta-analysis. JMIR Formative Research, 9, e60274. Formative
Dixon, J., Etkind, S. N., et al. (2025). “You like to be in control…”: Relational autonomy in future care planning for dementia. BMC Palliative Care, 24, 59.
Dutta, C., et al. (2022). Urinary tract infection induced delirium in elderly patients: A systematic review. Cureus, 14(1), e21045.
Gitlin, L. N., et al. (2010). A biobehavioral home-based intervention and the well-being of patients with dementia and their caregivers: The COPE randomized trial. JAMA, 304(9), 983–991.
Gjellestad, Å., et al. (2022). Trust-building interventions in home-dwelling persons with dementia resisting care: A qualitative analysis. Nursing Ethics, 29(8–9), 2192–2205.
Höfë, I., et al. (2024). Benzodiazepine use in relation to long-term dementia risk and mortality: A population-based cohort. BMC Medicine, 22, 363.
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Livingston, G., Huntley, J., Sommerlad, A., et al. (2024). Dementia prevention, intervention, and care: 2024 report of the Lancet Commission. The Lancet, 404(10425), 1603–1690.
Mok, P. L. H., et al. (2024). Multiple adverse outcomes associated with antipsychotic use in adults with dementia. BMJ, 384, e076268.
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A Final Word for Caregivers
If a task isn’t working, pause and ask: What might this “no” be telling us? Check for pain or illness, reduce sensory load, protect dignity and control, and try again with one-step cues and familiar comforts. If you’d like, NCCDP can point you to specific trainings, tools, and trainers who specialize in turning that “no” into a safer, calmer “yes.”
