November 3, 2023
Caring for a person with Lewy body dementia (LBD) can be very difficult, For example, cognitive changes in LBD are more likely to involve executive function and visuospatial function rather than memory, and behavior changes are more common. Furthermore, changes in sleep, movement, and autonomic functions (such as fainting) are common in LBD but rare in other dementias. In fact, the medical research literature shows that LBD caregivers have greater strain than caregivers for people with Alzheimer’s and other forms of dementia [1-3]. Unfortunately, greater caregiver strain leads to worse health outcomes—both for the person with LBD and for their caregivers [2,4].
To further study increased caregiver strain in LBD in comparison to other dementias, the Lewy Body Dementia Association (LBDA) partnered with the Parkinson’s Foundation and researchers from LBDA’s Research Center of Excellence (RCOE) at Rush University to distribute an online survey asking current and former caregivers about their own health. Hundreds of people responded, completing a research assessment entitled the Self-Administered Comorbidity Questionnaire. (“Comorbidity” is a term used in health research to refer to other significant health conditions a person may have.) The most commonly reported health conditions among LBD caregivers were high blood pressure (about 4 in 10 caregivers), depression (about one third), back pain (about one third), and arthritis (about 1 in 4) . These are all serious health conditions, often requiring treatment and frequently limiting activities.
The researchers found that LBD caregivers had more health conditions than others, especially among younger respondents. For example, 32% of LBD caregivers between the ages of 45-64 reported high blood pressure, whereas the rate of high blood pressure among general dementia caregivers was only 29% in a study in which the majority of respondents were much older (75 years old or greater). LBD caregivers also reported very high levels of depression—fully 35% of respondents had depression, which is more than triple the rate among Medicare beneficiaries. Furthermore, among LBD caregivers between the ages of 45-54, more than half had depression, a rate that is double what is found among other dementia caregivers.
Back pain was another important health condition for LBD caregivers, with 34% experiencing chronic back pain. These rates are closer to those of bedside and intensive care unit nurses, or caregivers for people with spinal cord injuries, than to other caregivers. Among younger LBD caregivers, this was especially common. More than 45% of LBD caregivers between 18 and 54 years old reported chronic back pain, compared to only 21% to 28% among all U.S. adults in this age group. This may be related to the need for lifting the person they are providing care for, given that parkinsonism and impaired mobility are far more common in LBD.
LBDA is a trustworthy place for you to find compassionate support, additional caregiving resources and education. Call or email the LBDA Support Services team (U.S. 1-800-539-9767 or email@example.com or find a support group near you. Or visit the LBDA’s caregiver resources page for additional information.
Lewy body dementia research needs your voice. If you would like to participate in research studies, from surveys like the one described above to full-scale global clinical trials, we encourage you to visit the LBDA clinical studies page. There you can find and learn about studies that might be right for you. Even better, consider taking the Lewy Trial Tracker survey, which will allow us to email you with information when new LBD studies are launched.
- Butler M, Gaugler JE, Talley KMC, et al. Care Interventions for People Living With Dementia and Their Caregivers. Agency for Healthcare Research and Quality (AHRQ); 2020.
- Bremer P, Cabrera E, Leino-Kilpi H, et al. Informal dementia care: consequences for caregivers’ health and health care use in 8 European countries. Health Policy. 2015;119:1459–71.
- Liu S, Liu J, Wang XD, et al. Caregiver burden, sleep quality, depression, and anxiety in dementia caregivers: a comparison of frontotemporal lobar degeneration, dementia with Lewy bodies, and Alzheimer’s disease. Int Psychogeriatr. 2018;30:1131–8.
- Armstrong MJ, Alliance S, Corsentino P, et al. Cause of death and end-of-life experiences in individuals with dementia with Lewy bodies. J Am Geriatr Soc. 2019;67:67–73.
- Fleisher JE, Moshkovich A, Levin M, et al. Family caregiver comorbidities in Lewy body dementia versus Alzheimer disease and associated disorders. Alzheimer Dis Assoc Disord. 2023;37:42-9.