National Survey Exposes Alzheimer’s Care Crisis: High Burden, Low Support, and Uneven Access to Essential Information

Family caregivers report extensive life and work disruption, while women receive dramatically less communication about tests, trials, and lifestyle strategies

Tampa, FL, Jan. 14, 2026 (GLOBE NEWSWIRE) -- A new national survey of Alzheimer’s patients and caregivers reveals widespread gaps in support, communication, and access to emerging diagnostic tools—painting a picture of families carrying an immense burden with limited guidance from the healthcare system.

TOP FINDINGS

• 79.3% of caregivers made some or significant life or work changes due to Alzheimer’s caregiving; only 13% made none.
• Nearly half (47.3%) of families are caring for someone in the moderate stage of Alzheimer’s disease.
• Only 32.3% of families received comprehensive lifestyle guidance for the patient, despite strong evidence that diet, exercise, and cognitive/social engagement can meaningfully help.
• 53% of respondents received no provider-initiated discussion of new Alzheimer’s blood tests, even as diagnostic innovations rapidly expand.
• Despite making up 64% of the caregivers in the survey, women were far less likely than men to receive provider-initiated information about blood tests, clinical trials, or lifestyle strategies.

Families Are Struggling Under the Weight of Caregiving

The vast majority of caregivers—4 in 5—report that Alzheimer’s has materially disrupted their daily lives, forcing changes in work schedules, personal routines, or family responsibilities. Only 13% said caregiving did not require significant personal adjustments.

“Caregivers are the unpaid backbone of Alzheimer’s care in this country,” said Guy Mansueto, Founder of PatientsForACure.org, the Alzheimer’s Disease advocacy group that sponsored the survey, and himself the child of an Alzheimer’s victim. “These findings show just how much they give—and how little structured support they receive in return. We founded PatientsForACure to inform people about the real steps they can take to slow the progression of the disease and hopefully slow it to a point where it has less impact on families and caregivers.”

Diagnosis and Care Planning: A System Defined by Confusion

Nearly one in five (18%) of the 300 respondents to the online survey reported they were not sure what stage of Alzheimer’s the patient was in. These uncertainties were compounded by inconsistent communication after diagnosis:

• Just 32.3% received comprehensive guidance on lifestyle changes for the patient.
• Nearly half (47.3%) said clinical trials were never discussed.
• 53% never received provider-initiated discussion of blood biomarker tests—despite these tools becoming more widely available and increasingly important for early detection.

“As diagnostic innovations expand, many providers still do not discuss new tools that could improve clarity and planning for families,” Mansueto notes.

Gender Disparities Reveal a Silent Crisis in Communication

One of the most striking—and troubling—findings is the gap in provider communication between men and women:

• Clinical trials discussed: 64.4% of men vs. 35.8% of women
• Blood tests mentioned: 55.0% of men vs. 30.5% of women
• Lifestyle guidance provided: 94.0% of men vs. 69.5% of women

These patterns persist even though women make up the majority of caregivers.

“These disparities suggest systemic differences in the information patients and caregivers receive, which may influence access, expectations, and decision-making,” according to the survey Executive Report, available for download at www.patientsforacure.org.

Emotional and Financial Strain Add to the Burden

Only 28% of caregivers say they received very adequate emotional support.
56.7% say the cost of Alzheimer’s care strongly or somewhat affects their decision-making.

Families say the improvements that would most meaningfully help are:

• New or more effective treatments (57.3%)
• Reduced cost burden (61.3%)
• Clearer communication from providers (56.3%)
• Easier access to specialists (53.7%)

About the Survey

This survey was conducted by PatientsForACure.org in partnership with Pollfish, an online research platform that uses randomized mobile sampling to reach a diverse national audience. A total of 300 adults in the United States participated December 1-3, 2025. Respondents were either close family members of Alzheimer’s disease patients or patients themselves. Survey quality controls—such as attention checks, response-time monitoring, and removal of duplicate or inconsistent submissions—were applied to reduce fraudulent or automated responses. The final dataset consisted of 93% caregivers and 7% individuals living with Alzheimer’s. Results were analyzed in aggregate and are unweighted.

About PatientsForACure.org

PatientsForACure.org is a national resource and advocacy platform dedicated to supporting individuals and families affected by Alzheimer’s disease. We provide accessible research updates, practical guidance, and community-based support to help people navigate the emotional and clinical challenges of this condition. Through education, connection, and advocacy, we work toward a future in which no one faces Alzheimer’s alone.

Todd Stein
Todd Stein Communications
todd@toddsteincommunications.com

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