Tips for families and caregivers of people with Alzheimer’s disease
LAST UPDATED: Aug 15, 2022
4 MIN READ
HERE'S WHAT WE'LL COVER
Each year, more than 16 million Americans take care of a family member or loved one with Alzheimer’s disease (AD) or other forms of dementia. Caring for a person with a complex disease like AD takes time and effort, and it’s easy to take on more than one can handle alone (CDC, 2019).
80% of people with Alzheimer’s disease are receiving care in their homes, rather than in a care facility, so the brunt of dementia care tends to fall on family and friends (CDC, 2019).
Research has shown that caregivers of patients with AD can suffer significant stress, particularly as the disease progresses. In many cases, the demands of caregiving can limit a caregiver’s ability to take care of themselves (Aarsland, 2007).
The first and most important rule for Alzheimer’s caregivers is taking care of yourself. That not only benefits you as a caregiver but might even help the person you’re taking care of. Studies suggest that optimizing support for caregivers also helps to keep patients with dementia cared for in the home, and may reduce emergency department visits (Spijker, 2008).
Here are four essential tips for caregivers of people with Alzheimer’s disease or other forms of dementia, that may offer some relief:
1. Don’t be afraid to ask for help
You don’t have to do everything yourself. It’s okay—and encouraged!—to ask for help from family and friends or to reach out to local services for additional home care needs.
Studies have shown over and over again that it is crucial to share the caregiving burden with other family members or outsource care, if possible. One example of outsourcing care is respite care, which can provide short-term relief for caregivers. Respite care can be provided at home—by a friend, another family member, or a paid service—or it can happen in an adult daycare center. Respite care can be arranged for just an afternoon or for several days or weeks. The benefit of these services is providing a period of relief for caregivers so that they can come back refreshed and rested (Nichols, 2011).
Most insurance plans do not cover these costs, but there are national and local resources available to find out how to pay for some of this help or get respite care services. Check out our resource list to find out where to find respite care and how to pay for these services.
2. Consider mental health support
Research has shown that family caregivers of people with Alzheimer’s are at higher risk for anxiety and depression (CDC, 2019).
If you’re dealing with stress, depression, or anxiety as a caregiver, talk to your healthcare provider about treatment options and support strategies. Studies on caregivers of people with Alzheimer’s have shown that counseling can reduce stress and improve emotional wellbeing. One study on caregivers of people with dementia found that an eight-session educational program led to less caregiver anxiety and depression and improved quality of life over an eight-month period (Livingston, 2013).
The program included:
Education about stress and where to get emotional support
Understanding behavior changes at different stages of the disease
Behavioral management techniques, including changing unhelpful thoughts and promoting acceptance
If you are concerned that you might be anxious or depressed, see your healthcare provider who can connect you to a mental health professional or social work professional. They can provide emotional support and help develop plans to manage caregiver stress and promote self-care.
3. Join a support group
Meeting other caregivers who are in a similar situation can give people a chance to share their experiences, helping them avoid feeling isolated. More than half (57%) of family caregivers of people with Alzheimer’s and related dementias provide care for four years or more, so joining these support groups can help you build long-lasting friendships and support systems (CDC, 2019).
Alzheimer's disease caregiver groups exist almost everywhere. You can meet in person or online to share experiences and tips and give each other support. While research on this topic is limited, some studies suggest that support groups can positively affect a caregiver’s psychological well-being, depression, and social outcomes (Chien, 2011).
Check out our resource list to help you find support groups in your community.
4. Mitigate stress by using these techniques
Everyone experiences stress from time to time. But caregivers of people with Alzheimer's often have high levels of stress, for a long period of time. You may find yourself with so many tasks and responsibilities that you forget to destress, mentally and physically.
Managing stress is essential for overall well-being and can reduce the risks that come with long-term stress, such as heart disease.
Here are some healthy habits that can help you destress:
Exercise regularly: You don’t have to be at the gym every day to reap the benefits of exercise. Researchers suggest you can reduce stress within hours of exercise and that exercise can break the cycle of inactivity, stress, and negative emotions (Schultchen, 2019).
Try gratitude journaling: Gratitude journaling—jotting down what you are grateful for each day—can be an effective way to stay positive. It has been shown to improve mood, happiness, and life satisfaction while reducing depression symptoms (Cunha, 2019).
Eat healthy to boost mood: Eating five servings of fruit and vegetables a day has been linked to lower psychological distress, and some studies link higher antioxidant levels with lower levels of depression and anxiety (Abshirini, 2019).
Try meditation and breathing exercises: Small studies suggest that just 5–12 minutes of daily meditation, six days a week, for eight weeks may reduce levels of stress and anxiety (Burgstahler, 2019). Or, you can try deep breathing; long, deep breaths signal to the body’s nervous system that it’s time to reverse the fight-or-flight response and move to what is referred to as the rest-and-digest mode (Perciavalle, 2017).
It’s a good idea to take steps to manage your stress early before it becomes severe or chronic. The longer you wait, the more your stress and its related risks may build-up. Add some of these strategies to your daily routine to manage the stresses inherent in providing long-term care through the various stages of Alzheimer’s.
If you have any medical questions or concerns, please talk to your healthcare provider. The articles on Health Guide are underpinned by peer-reviewed research and information drawn from medical societies and governmental agencies. However, they are not a substitute for professional medical advice, diagnosis, or treatment.
Aarsland, D., Brønnick, K., Ehrt, U., et al. (2007). Neuropsychiatric symptoms in patients with Parkinson's disease and dementia: frequency, profile and associated care giver stress. Journal of Neurology, Neurosurgery, and Psychiatry, 78 (1), 36-42. doi:10.1136/jnnp.2005.083113. Retrieved from https://pubmed.ncbi.nlm.nih.gov/16820421/
Abshirini, M., Siassi, F., Koohdani, F., et al. (2019). Dietary total antioxidant capacity is inversely associated with depression, anxiety and some oxidative stress biomarkers in postmenopausal women: a cross-sectional study. Annals of General Psychiatry, 18 (1). doi:10.1186/s12991-019-0225-7. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6423824/
Burgstahler, M. & Stenson, M. (2019). Effects of guided mindfulness meditation on anxiety and stress in a pre-healthcare college student population: a pilot study. Journal of American College Health, 68 (6), 666-672. doi:10.1080/07448481.2019.1590371. Retrieved from https://pubmed.ncbi.nlm.nih.gov/30939081/
Centers for Disease Control and Prevention (CDC). (2019). Caregiving for a person with Alzheimer’s disease or a related dementia. Retrieved from https://www.cdc.gov/aging/caregiving/alzheimer.htm
Chien, L. Y., Chu, H., Guo, J. L., et al. (2011). Caregiver support groups in patients with dementia: a meta-analysis. International Journal of Geriatric Psychiatry, 26 (10), 1089-1098. doi:10.1002/gps.2660. Retrieved from https://pubmed.ncbi.nlm.nih.gov/21308785/
Cunha, L. F., Pellanda, L. C., & Reppold, C. T. (2019). Positive psychology and gratitude interventions: A randomized clinical trial. Frontiers in Psychology, 10 . doi:10.3389/fpsyg.2019.00584. Retrieved from https://pubmed.ncbi.nlm.nih.gov/30949102/
Livingston, G., Barber, J., Rapaport, P., et al. (2013). Clinical effectiveness of a manual based coping strategy programme in promoting the mental health of carers of family members with dementia: pragmatic randomised controlled trial. BMJ; 347 :f6276. doi:10.1136/bmj.f6276. Retrieved from https://pubmed.ncbi.nlm.nih.gov/24162942/
Nichols, L. O., Martindale-Adams, J., Burns, R., et al. (2011). Translation of a dementia caregiver support program in a health care system--REACH VA. Archives of Internal Medicine, 171 (4), 353-359. doi:10.1001. Retrieved from https://pubmed.ncbi.nlm.nih.gov/21357811/
Perciavalle, V., Blandini, M., Fecarotta, P., et al. (2017). The role of deep breathing on stress. Neurological Sciences: Official Journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology, 38 (3), 451-458. doi:10.1007/s10072-016-2790-8. Retrieved from https://pubmed.ncbi.nlm.nih.gov/27995346/
Schultchen, D., Reichenberger, J., Mittl, T., et al. (2019). Bidirectional relationship of stress and affect with physical activity and healthy eating. British Journal of Health Psychology, 24 (2), 315–333. doi:10.1111/bjhp.12355. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6767465/
Spijker, A., Vernooij-Dassen, M., Vasse, E., et al. (2008). Effectiveness of nonpharmacological interventions in delaying the institutionalization of patients with dementia: a meta-analysis. Journal of American Geriatric Society, 56 (6), 1116-1128. doi:10.1111/j.1532-5415.2008.01705.x. Retrieved from https://pubmed.ncbi.nlm.nih.gov/18410323/