Across Europe, nearly 1 in 4 adults older than 65 years requires daily assistance. Italy is among the European countries with the highest proportion of older adults, with an estimated 1.28 million individuals living with mild-to-severe dementia. These data come from an Italian study published in the Journal of the American Medical Directors Association, with findings that highlight critical gaps affecting this particularly vulnerable population.

The national survey shows that the majority of hospitalized older adults who may lack full decision-making capacity do not have a legal guardian, leaving clinical decisions in a regulatory gray zone. Only 8.8% of older patients have a formally appointed guardian, whereas most caregivers report making medical decisions without formal legal authorization.

Widespread Gap

The multicenter cross-sectional survey, titled Yes, I Consent! enrolled 409 patients aged 65 years or older across 11 Italian hospitals between July and October 2023. The study aimed to measure the prevalence of legal guardianship, informed consent practices, and legal awareness among older patients and their caregivers, with particular attention to individuals with dementia.

The cohort had a mean age of 83.8 years, 55% were women, and nearly one third (31.8%) had dementia. Frailty was high: 63% required assistance with activities of daily living, and 93% of patients with dementia were fully dependent. Common comorbidities included sensory impairment, hypertension, heart failure, and diabetes, consistent with a typical geriatric population.

Despite this high level of vulnerability, legal protections were limited. “Overall, 12 patients (3.0%) had full guardian, 91.7% of them being adult children, with 58.3% caring for patients with dementia. An additional 23 (5.8%) patients had a legally recognized guardian/support administrator, most commonly an adult child (78.3%), followed by a spouse or partner (13.4%). Notably, 69.6% of the individuals under guardianship had dementia,” the authors reported.

Health Literacy

These findings suggest that many decisions are made outside formal legal frameworks, placing both patient autonomy and physicians’ professional responsibility at risk. Part of the problem appears rooted in limited awareness among those involved. More than 70% of caregivers of patients with dementia reported making medical decisions without formal authority. Only 40% of caregivers of patients with dementia, and 32.8% of other caregivers recognized the need for a legal appointment to act in this role.

In a country where informal caregiving is the norm, the assumption of decision-making authority by family members may nonetheless jeopardize patient rights. “On one hand, the absence of a guardian may leave the older person unprotected or exposed to neglect, exploitation, or inappropriate medical interventions; on the other hand, the designation of a full guardian may hinder the balance between autonomy and self-determination vs protection,” wrote the authors.

Legal Awareness

Italian law requires that only a formally appointed representative may provide consent on behalf of an incapacitated patient, except in rare circumstances. Although everyday clinical practice often relies on informal delegation, awareness of the legal framework is increasingly essential, particularly for primary care physicians.

Therefore, increasing the knowledge of the legal framework might contribute to safeguarding the rights of vulnerable older adults, promoting shared care planning, and reducing ethical conflicts that may arise in the absence of clear decision-making structures.

This story was translated from Univadis Italy, part of the Medscape Professional Network.