Alzheimer’s is a progressive disease that gradually destroys a person’s memory as well as their ability to learn, make decisions, communicate and perform daily activities. Because of the nature of the disease, Alzheimer’s not only affects the millions of North Americans who have been diagnosed1 but also the lives of all the people who are close to them, especially the spouses, children or friends who are thrust into the role of primary caregiver.
Approximately 70% of people with Alzheimer’s disease live at home, with friends and family providing roughly 75% of their care.2 Because of the progressive nature of the disease, as time goes on, changes in behavior, attitude and cognition make caring for a person with Alzheimer’s more difficult than caring for a loved one with another type of chronic condition or disability.3 As a result, many Alzheimer’s caregivers suffer from caregiver’s burden, which encompasses all of the negative effects on their physical, mental or emotional health, social life and financial status.4-6 Caregivers often wind up feeling depressed, trapped, angry, isolated and anxious.7-12
Two important factors that influence how well a caregiver handles the experience include social support from others and care-giving education and/or training;13,14 both of which form the core of Alzheimer’s support group programs. Support groups give caregivers and other loved ones the opportunity to share their feelings, worries and experiences in a safe, comfortable environment. Many loved ones of Alzheimer’s patients, whether they are a caregiver or not, often find it easier to express themselves in a group of people who do not know their loved one with Alzheimer’s but who are dealing with similar situations. Support groups also generally have an educational component where friends and family can learn more about the stages of the disease, care-giving tips and strategies, relevant legal advice, etc.
Joining a support group has been shown in scientific studies to improve the lives of caregivers and loved ones – see the list of references below for just a few of them. More specifically, joining a support groups reduces the incidence of depression and anxiety among caregivers2,15,16 and makes them better prepared to face the challenges ahead.17 Support group participation also increases a person’s understanding of the disease, reduces feelings of isolation, helps resolve negative feelings and helps caregivers become more aware of their own needs and regain a sense of self-identity.8
The information, advice and comfort gained from attending a support group not only helps the caregiver and other loved ones; it also can help the person with Alzheimer’s.18 For example, Alzheimer’s patients whose spouses were part of a support group stayed at home on average a year and a half (557 days) longer before being placed in a nursing home, mostly due to the caregivers’ social support network and their improved ability to deal with the situation mentally and emotionally.19 Although nursing home placement is often a necessity, the unfamiliar environment can increase confusion, as well as the risk of death among Alzheimer’s patients.20
Having a strong social support system is essential after a loved one is diagnosed with Alzheimer’s. Although many people may find this support within their existing networks of friends and family, Alzheimer’s support groups are a good add-on. Support programs offer a way to strengthen emotional well-being, increase knowledge about the disease and improve care-giving skills, which can lead to improved outcomes for both the Alzheimer’s patient and their loved ones.
In the USA, to find your nearest support group through your local Alzheimer’s Association, call 1-800-272-3900 or visit alz.org. Also, try searching for your local Area Agency on Aging at caring.com/local/area-agency-on-aging. In Canada, call 1-800-616-8816 or visit alzheimer.ca. In the UK, visit alzheimers.org.uk. There is also a support group online at alzheimer.wustl.edu/adrc2/alzheimerlist and a good online forum at caring.com/forums/alzheimers-forum. Reach out and get the support you need!
References:
1. Herbert LE, Scherr PA, Binenias JL, Bennett DA, Evans DA. Alzheimer disease in the U.S. population: Prevalence estimates using the 2000 Census. Arch Neurol. 2003;60:1119-1122.
2. Tompkins SA, Bell PA. Examination of a Psychoeducational Intervention and a Respite Grant in Relieving Psychosocial Stressors Associated With Being an Alzheimer’s Caregiver. J Gerontol Social Work. 2009;52:89-104.
3. Light E, Niederehe G, Lebowitz B (eds). Stress effects on family caregivers of Alzheimer’s patients. New York: Springer; 1994.
4. George L, Gwyther L. Caregiver well-being: a multidimensional examination of family caregivers of demented adults. Gerontologist. 1986;26:253-259.
5. Dunkin J, Anderson-Hanley C. Dementia caregiver burden: a review of the literature and guidelines for assessment and intervention. Neurol. 1998;51(Suppl 1):53-60.
6. Wimo A, Jonsson B, Karlsson I, Winblad B. Health Economics of Dementia. John Wiley & Sons, New York; 1998
7. Schulz R, Newsom J, Mittelmark M, Burton L, Hirsch C, Jackson S. Health effects of caregiving: The caregiver health effects study, an ancillary study of the cardiovascular health study. Ann Behav Med. 1997;19,110-116.
8. Barnes RF, Raskind MA, Scott M, Murphy C. Problems of families caring for Alzheimer patients: Use of a support group. J Am Geriatr Soc. 1981;29(2):80-85.
9. Connell CM, Janevic MR, Gallant MP. The cost of caring: Impact of dementia on family caregivers. J Geriatr Psychiatr Neurol. 2001;14:179-187.
10. Croog S H, Burleson JA, Sudilovsky A, Baume RM. Spouse caregivers of Alzheimer patients: Problem response to caregiver burden. Aging & Mental Health. 2006;10, 87-100.
11. Markowitz JS, Gutterman EM, Sadik K. Health-related quality of life for caregivers of patients with Alzheimer disease. Alzheimer Dis & Assoc Dis. 2003;17:209-214.
12. Morano CL. The role of appraisal and expressive support in mediating strain and gain in Hispanic Alzheimer’s disease caregivers. J Ethnic & Cultur Diversity in Social Work. 2003;12(2):1-18.
13. Karlin NJ, Bell PA. Self–efficacy, affect, and seeking support between caregivers of dementia and non–dementia patients. J Woman & Aging. 1992;4:59-77.
14. Schulz R, O’Brien AT, Bookwala J, Fleissner K. Psychiatric and physical morbidity effects of dementia caregiving: Prevalence, correlates, and causes. Gerontologist. 1995;35:771-791.
15. Hayslip B, Han G, Anderson CL. Predictors of Alzheimer’s Disease Caregiver Depression and Burden: What Noncargiving Adults Can Learn from Active Caregivers. Edu Gerontol. 2008;34:945-969.
16. Mittelman MS, Roth DL, Coon DW, Haley WE. Sustained Benefit of Supportive Intervention for Depressive Symptoms in Caregivers of Patients With Alzheimer’s Disease. Am J Psychiatry. 2004;161:850-856.
17. Sorensen LV, Waldorft FB, Waldemar G. Early conselling and support for patients with mild Alzheimer’s disease and their caregivers: A qualitative study on outcome. Aging & Mental Health. 2008;12(4):444-450.
18. Nolan M, Grant G, Keady J. Understanding Family Care. Open University Press, Buckingham; 1996.
19. Mittelman MS, Haley WE, Clay OJ, Roth DL. Improving caregiver well-being delays nursing home placement of patients with Alzheimer disease. Neurol. 2006;67:1592-1599.
20. Aneshensel CS, Pearlin LI, Levy-Storms L, Schuler RH. The transition from home to nursing home mortality among people with dementia. J Gerontol B Psychol Sci Soc Sci. 2000;55B:S152-S162.
