You can’t buy a pack of gum, change your car’s oil, or order a box of birthday cake candles online without getting a survey asking how satisfied you are with the merchant’s service.
Customers of every age and economic background who purchase products or services are constantly bombarded with “how did we do?” marketing questions.
But one group of people that will require ongoing services for years to come – sometimes as long as two decades – is never asked “how are we doing?” A researcher at University of Colorado, with funding from the Alzheimer’s Association, is looking to change that.
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Dr. Hillary Lum, associate professor in the Division of Geriatric Medicine at University of Colorado School of Medicine, knows what it’s like to be a caregiver for a parent living with dementia, including helping her father care for her mother as she lives with Alzheimer’s disease. And she knows what it’s like to have limited opportunities to give feedback on her mom’s dementia care.
Today, Dr. Lum is looking to change that by seeking out caregiver perspectives regarding their satisfaction with the care the person with dementia is receiving. Dr. Lum’s Caregiver Voice Survey is a two-year study, funded by the Alzheimer's Association, designed to measure current levels of care and then look for opportunities to suggest improvements.
“Right now, no one is asking family members if the care their loved one is receiving is good,” said Dr. Lum. “Once we can measure it, we can seek to improve the level of dementia care.”
Dr. Lum’s research team will recruit more than 300 family care partners to answer questions related to quality dementia care, including mood, cognition, safety, and access to relevant resources. The telephone-based survey will also explore the caregivers’ own experiences and well-being.
“Care partners appreciate that we’re asking these questions of them, and asking about their own experiences and well-being,” said Dr. Lum. “The types of questions we’re asking are causing a reflection – sometimes positive and sometimes uncomfortably reflecting on the reality of their own situation. Some people will tell us: ‘We haven’t even thought about that.’”
Dr. Lum’s team will spend 2024 recruiting additional participants for the study with preliminary results scheduled for release in 2025. She intends to share those results with primary care clinics and others in the medical community with the intention of helping them determine the quality of dementia care in their care programs and potential opportunities for improvement.
The study focuses on family care providers from traditionally underserved communities, including Black and Hispanic Americans, as well as individuals from rural areas. The researchers recognize the importance of different family cultures and life experiences in caregivers’ responses.
“In the future, we will establish a bilingual (English-Spanish) care partner advisory group,” Dr. Lum said. The role of these advisors will be to help develop culturally and linguistically-adapted Spanish-language versions of the quality of dementia care surveys.
There are more than 76,000 Coloradans among the 6.7 million people across the United States living with Alzheimer’s disease, the seventh-leading cause of death. Providing them with unpaid care, averaging 30 hours per week, are family and friends: 160,000 across Colorado and over 11 million in the U.S.
To volunteer to participate in Dr. Lum’s research, go to
bit.ly/CaregiverVOICE or learn more by emailing
dementia.care@cuanschutz.edu.
The Alzheimer’s Association is the world’s leading non-profit funder of Alzheimer’s research with more than $320 million active in over 1,000 projects in 54 countries. To learn more about the programs and services provided at no charge by the Association, go to
alz.org or call the Association’s free 24/7 Helpline at 800-272-3900.
Alzheimer's Association
The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia.™ For more information, visit www.alz.org or call the 24/7 Helpline at 800.272.3900.