A new national survey of Australians living with dementia and their caregivers highlights difficulties in navigating support services and the high physical and emotional toll on primary caregivers.

The Australian Institute of Health and Welfare's (AIHW) Living with Dementia Survey, conducted between May 2025 and January 2026, details the experiences of 266 people with dementia and 1,648 caregivers. The findings indicate that while many patients report positive support from family, the path to diagnosis is often complex and accessing formal support services remains difficult for both patients and their caregivers.

Diagnostic Pathways and Experiences

The survey found that fewer than half of respondents received a dementia diagnosis within the first year of noticing symptoms, with three in five receiving one within three years. Barriers to diagnosis included appointment costs, delays in specialist access, and symptoms being attributed to other causes. Despite these hurdles, three in four patients reported being treated respectfully by health professionals, and many noted that a diagnosis helped them understand their symptoms and plan for the future.

Caregiver Burden and Well-being

Caregivers face significant challenges, with nearly one-third providing 70 hours or more of care per week and about half providing at least 40 hours. Over 70% of women and 60% of men reported feeling overwhelmed by their responsibilities, and nearly half noted a deterioration in family relationships. Caregivers reported lower overall well-being than the patients they support, citing complicated application processes and long waiting times when attempting to access services like My Aged Care or Dementia Australia.