Running head: SUPPORT GROUP EXPERIENCE 1

Support Group Experience

Wilkes University

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Abstract Support groups are fundamental in providing emotional, as well as practical support to caregivers of individuals diagnosed with Alzheimer’s disease or other dementias. It has been estimated according to Drossel, Fisher & Mercer (2011), “Seventy percent of individuals who have been diagnosed with a progressive, degenerative dementia receive support and care within their families” (p. 109). The commitment to advocate and care for a family member or friend suffering with dementia can have a devastating toll on the caregiver’s emotional and physical well being. Drossel, Fisher & Mercer further state “To manage increasing demand, primary caregivers tend to progressively restrict their lives to care giving activities, thereby increasing the dyad’s social isolation” (p. 110). Dementia support groups are vital in helping the caregiver understand the disease process, behaviors and, feel supported and heard. Participants in dementia support groups share a bond that can last a lifetime. This paper focuses on the purpose and dynamics of the support group. The role of the support group leader, dynamics and demographics of the group as well as the therapeutic factors observed as a participant-observer will be discussed. An in-depth discussion of my personal observations and feelings and how attending this group has affected me will be explained.

Purpose of Support Group

The purpose of the Alzheimer’s caregiver support group according to the Alzheimer’s Association (2012), “Is to offer individuals support and information that is specific to dementia. It provides a forum for family members and friends to share feelings, concerns, and information” (p. 2). This support group is sponsored by the

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Alzheimer’s association and Charlotte Hungerford hospital. It meets the third week of every month and there is no fee. The local Alzheimer’s chapter in Connecticut provides the group meetings with literature and booklets on various topics of concern. Some pamphlets were how to be a healthier caregiver, personal care for the Alzheimer’s patient, handling behavioral issues, and pamphlets listing local community agencies who offer support. The group is intended to empower caregivers to share their stories and exchange coping skills. According to the Alzheimer’s Association (2012), “Sharing those ideas in a caregiver support group can prevent care partners from having to re- invent the wheel” (p. 3).

Demographics of the Group

There were 11 members in attendance. This included the support group leader and myself as a participant-observer and another student who is in the process of earning her baccalaureate in nursing as a second career. The normal group size according to the leader ranges between 10-15 members, however; on this evening it was snowing with freezing rain and she had considered canceling the session but decided to keep it as scheduled. There were two male members and the rest were female. The age range was between 40 years of age to 80. Of the 11 members, four had a parent with some form of dementia and six had a spouse with dementia. The other student did not have any family member with dementia and her role was to observe and write a similar paper as to the dynamics of the support group. The setting took place in a dining room in the hospital.

Role of the Support Group Leader The support group leader played the part of many roles in relation to the group members. She was the group facilitator, educator, supporter, advocate and counselor.

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She waited a few minutes until after the usual start time due to inclement weather. She started the meeting by introducing herself and her position to the group. Her name is Karen and she is a licensed clinical social worker. She shared with us her personal experiences with family members suffering from Alzheimer’s dementia. She stated the intent of the group is to have an open forum for discussion for caregivers to be heard, and ideas to be shared regarding what strategies were successful or not successful when caring for a loved one with dementia. She presented the two rules of the group: every person has a chance to speak one at a time, and what is said in the group session stays in the group session. All members took a turn speaking about whatever was on their mind and she facilitated the group interactions by offering an educational component regarding the disease process and expected behaviors to be aware of as the family members evolve throughout the dementia stages. She played the role of counselor to a woman (Harriet) who just lost her husband three weeks ago to Parkinson’s dementia by offering her support and showing empathy and compassion when she first spoke. She initially was considering cancelling the session due to the weather but decided to keep it scheduled as she sensed someone may have a special need that night.. When she heard of her husband’s passing she hugged the wife, and they spoke for a brief time before the beginning of the meeting.. It was very clear to me they had shared a special connection to one another. The wife said she needed to be there to talk and listen to others. Karen referred to this as a “Godcident” as she stated we were all there for a special purpose after hearing of this loss. Karen spoke to the other student in the group as she had questioned she thought the group was only for caregiver’s of Alzheimer’s patients. She educated her saying the group is for caregiver’s of any type of dementia and then

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discussed briefly the different types of dementia to her. Other participants shared the type of dementia their loved ones had at this time. Karen offered many pamphlets and handouts to the group regarding available community services and healthy ways to care for ourselves. Her role changed throughout the duration of the session from listener, educator, and counselor depending on the participants’ concerns. There are four key themes how support groups affect caregivers’ experience and they are according to Hornillos and Crespo (2012), “Helping to construct an identity as a caregiver; promoting a sense of personal competence in the role of caregiver; fostering the use of formal support services; and building a community context in which the caregivers feel understood” (p. 158). I believe Karen had all of these qualifications and was an effective group leader.

Therapeutic Factors Observed in the Group According to Yalom (2005), “One of the most fascinating aspects of group therapy is that everyone is born again, born together in the group and is on equal footing” (p. 183). One therapeutic factor I observed is altruism. Group members gain by giving of themselves and helping others (Yalom, 2005). Examples of this include Harriet, who desired to come to the meeting to share the peaceful passing of her husband and to offer suggestions to other group members when appropriate. Harriet spoke how she was with her husband when he took his last breath and she was at peace with his passing. Harriet also helped me when I shared my story about my mother. My father asked me to promise him I will do whatever it takes for my mother to stay at home and not be placed in a nursing facility. Harriet almost immediately informed me this is not possible and cannot be promised. Harriet said a time may come when she may need nursing home care and

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to promise otherwise would place a significant burden of stress on me. Karen then used the therapeutic factor of guidance by suggesting if asked this again to say, “I will do everything I possibly can to keep her home”. Karen also used universality by having other members tell their stories about the time they needed to make a decision to place their loved one in a nursing home. Another factor observed was group cohesiveness. The group seemed to show a genuine caring and acceptance of one another and all members at one point self-disclosed some embarrassing stories of how they tried unsuccessfully to change their loved ones behavior before learning it is our behavior that has to change. I could sense the group felt they all belonged and were accepted. Another therapeutic factor I observed was instillation of hope. Harriet and other group members shared the importance of being aware of the times when the person has moments of clarity. Another member named Tony suggested writing in a journal to capture those rare moments, as he as well as other members in the group have journals, and feel this brings them a sense of hope and peace.

Observations About the Needs of the Group

According to Zemlin (2014), “In order to ensure quality of life for people suffering from dementia, caregivers need to have both a suitable attitude to their clients as well as the corresponding expertise in caring for them” (p. 81). Knowledge needs to be communicated practically and simply to ensure understanding (Zemlin, 2014). I observed the needs of the group to be fairly simplistic. I sensed the group needed to feel included, empowered, heard, supported, and valued. I felt all the needs of the group were met by either the leader or another member of the group. They all shared a common bond and longed for commonalities with one another.

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Feelings Regarding this Experience

To be honest, I was nervous going to this meeting. I have never been to a support group before and this ended up enriching me two-fold. I was both a student and also have a family member with dementia. I knew I could have played it safe by not sharing my own personal story, but quickly felt such a sense of community and compassion from the other members and found myself opening up to these wonderful strangers. There was no criticism or judgment, only caring. I came away from this meeting feeling grateful. I also knew the support group leader and worked with her many years ago when I was a new nurse. I had no idea she was the group leader before entering the session. After this I realized I am not alone in my fears at all and I can be open to many others who have similar situations and learn how they coped and adjusted to their “new normal”. I am planning on attending next month and it is my hope to encourage others to give support groups a chance. They may discover there is a whole other world they weren’t aware of.

Conclusion

In conclusion, the purpose of caregiver support groups and the role of the group leader was discussed. The therapeutic factors evident were reviewed as well as the individual needs of the group. My observations and personal experience regarding this will help enrich my life by gaining further insight into the disease process and the various strategies needed to effectively care for those with dementia. According to Chen, Chu, Guo, Liao, Chang, Chen & Chou (2011), “Studies show that caregiver support groups where members are attentive and supportive to one other and share experiences and knowledge, are able to help individuals relieve the pressures and burdens of caregiving” (p. 1090).

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References

Alzheimer’s Association. (2012). Get the emotional support you need. Retrieved from

http://www.alz.org.

Chien, L., Chu, H., Guo, J., Liao, Y., Chang, L., Chen, C., & Chou, K. (2011). Caregiver support groups in patients with dementia: A meta-analysis. International Journal of Geriatric Psychiatry, 26(10), p. 1089-1098. Retrieved from http://av4kc7fg4g. search.serialsolutions.com.ezproxy.apollolibrary.com Drossel, C., Fisher, J. E., Mercer, V. (2011). A DBT skills training group for family caregivers of persons with dementia. Geriatric Behavior Therapy: The Challenges of a Changing Environment, 42(1), p. 109-119. Retrieved from http://www. sciencedirect.com.ezproxy.apollolibrary.com/science/article/pii/S00057894 10001115 Hornillos, C., Crespo, M. (2012). Support groups for caregivers of Alzheimer’s patients: A historical overview. The International Journal of Social Research and Practice,

11(2), p. 155-169. Retrieved from http://dem.sagepub.com.ezproxy.apollolibrary. com/content/11/2/155

Yalom, I. & Leszcz, M. (2005). Theory and practice of group psychotherapy (5th ed.). New York: Basic Books. Zemlin, C. (2014). Transfer and implementation of knowledge and attitude-a particular challenge for caregivers in dementia care. Journal of Nursing Education and Practice, 4(1), p. 81-88. Retrieved from http://search.proquest.com.ezproxy

apollolibrary.com/docview/1441912244

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