Support groups for relatives of people with dementia syndromes in an international context Families often, when a severe illness in a close person occurs or is diagnosed, decide to care for that family member at home. After some time, under the pressure of the burden associated with caring for a dependent loved one and the demands of everyday duties, the family may reach a state of psychological and physical exhaustion. At the first signs of fatigue, the family usually turns to other close people, such as friends and neighbors, and later asks for help from assisting professionals and experts. These are situations in which a family becomes a client of social work. One possible form of social work with families is accompaniment, support, and help through support groups.

Support groups focused on helping relatives of people with dementia of different etiologies are a new research phenomenon in social work in Slovakia. Social work with families is mainly oriented toward and studied in relation to families with children, adolescents with socioeconomic strain, or persons with disabilities. Our aim is to introduce support groups that bring together adult children (and possibly spouses and partners) in productive age who care either for their partners in productive age or for parents and siblings in post-productive age. The term relatives (close persons) is used in the professional public and in literature also in connection with the term family caregiver. According to Repková (2010), this refers to a person who provides care without pay, usually to their closest family members and typically on the basis of close family ties, without expectation of financial reward. Bodanrovová and Šelestiaková (2011) also use the term family, informal caregivers, who are an indispensable component in providing care and support to their older relatives. When needed, this role is most often taken by spouses, husbands/wives, partners and children, or their partners. It is mostly people in older adulthood (50+) and also people in younger old age (60+). Fertaľová et al. (2011) confirm in their study that in terms of family relationship, adult children account for 62% and life partners 28%, while the remaining 10% of informal caregivers are close relatives (grandchildren and daughters-in-law). In terms of gender, 75% are women. (Zvěrová, 2010) Adult children of parents in middle and older senior age who provide care in a home setting seek information about the specific disease and feel a need for understanding and for preserving their own privacy. Over time they experience fatigue, a need for relief, and the need for social interventions, support, or counseling regarding long-term care for their parents, siblings, or spouses.

Defining the concept of support groups in an international context

Support groups (support group) have a history of several decades, especially in Scandinavian countries and the USA. According to Hrozenská and Gabrielová (2011), the use of association groups for helping persons with dementia and the establishment of self-help groups is a common option abroad, just like systems of day centers, personal assistance, and home care provided by professionals as well as volunteers and charitable organizations. To clarify the understanding of the support group concept in an international context, we describe Norwegian, Danish, English, German, American, Czech, and Slovak models of the support group concept.

The National Network of Support Groups (Nasjonalt Støttegruppenettverk NSN) in Norway is an organization that brings together all support groups in the country. Groups are formed for various target groups regardless of age, gender, race, any other affiliation, or region. The most important common feature is the link to a specific event. An event can be a particular illness affecting several people or a disaster (natural, aviation, terrorist, etc.). Thus support groups are formed for flood-affected areas and support groups focused on specific illnesses such as cancer, multiple sclerosis, or dementia. A key feature of a support group is that it forms a supplementary service to public professional social services (Sormul, 2015). In relation to dementia syndrome, in every Norwegian city and municipality a dementia expert team (so-called demensteam) has been established, which closely cooperates with general practitioners, social workers from social-health departments, or social welfare units at city and municipal offices. This expert team also cooperates with the National Institute for Public Health (Nasjonalt forening for folkehelse), which establishes and manages support groups in the area of work with persons with dementia. Each support group has the form of an educational group and a discussion group. In this way, both an educational and therapeutic component of professional practice are combined. Both parts are coordinated by experts who work for the National Institute for Public Health or as volunteers. The priority of support is psychosocial support for relatives through the creation of a safe space for emotional ventilation, exchange of experiences, and information gaining through education. Some support groups take the form of coffee meetings (Temakafé) or relaxation offers such as yoga. In Norway, Support Centers for Relatives (Pårørendesenteret) have also been established, offering diagnosis-independent support to the family and to close persons (neighbors, friends, colleagues). Their support consists of providing social-psychological counseling and practical information to help those they care about. Support centers for relatives also serve as methodological centers for professionals in care and social services, as research centers, and as centers for developing national cooperation between private and public sectors.

In Denmark, an intervention program to support relatives providing care in the family environment has been developed. It is called Danske Alzheimer interventionundersøgelse (DAISY) and is the result of cooperation between the Danish Ministry of Health and the National Research Knowledge Center for Dementia (Nationalt Videnscenter for demens). The purpose of the DAISY project was to examine ways to improve support for people diagnosed with dementia in early stages. Based on this, a model was developed — an interactive guide for the helping professional, used as part of a counseling process for people in early-stage dementia and their family members who need to gain as much knowledge as possible about dementia. The model is intended for municipal and city employees, helping professionals working in social service institutions, and associations providing psychosocial support to relatives of people with dementia. It primarily includes interview techniques for counseling carried out in face-to-face and telephone form, and educational courses for persons diagnosed with dementia of different etiologies and their relatives. A further project linked to Daisy is the care guide for a citizen with dementia — Demens guiden. In Denmark, the Danish Red Cross offers a volunteer program called “Family caregiver support,” in the form of a visit by a “friend” in the home of a person with dementia for one to two hours, while the relative can leave the home and attend to activities outside it. This service does not replace social care, but is offered as a supplementary service in the form of concrete support for the relative who provides 24-hour care. (Sundhetsstyrrelsen, 2016) The basic premise of a support group is concrete help for a specific family in a regular cycle.

In the Czech Republic, according to Jarolímová and Nováková (2013), the term self-help group is used as a synonym for support groups for family caregivers of seniors with dementia syndrome. Support groups in the Czech Republic arise as organizations and clubs to help relatives who care for a close person with Alzheimer’s disease or another form of dementia. Both authors state that a self-help group for relatives takes place with the presence of a facilitator. The facilitator leads conversations with participants who are under stress from the caregiving burden and also conducts conversations at the individual level outside the group. In its materials, the Czech Alzheimer’s society (2016) offers potential participants of these groups two options. Čaj o páté is a self-help group meeting for family caregivers, focused on obtaining information about help for a person with dementia. During this meeting, the relatives caring for someone with dementia exchange information with each other. Toulky pamětí a duší is a support group for people in an early stage of dementia, where a specialist tries to help them cope with dementia symptoms and provides psychosocial support. The primary goal of such groups is to provide emotional support to those caring for a person with dementia. The group works on the principle of mutual sharing and collaboration: each group member has something to offer (experience and information) and something to gain (by re-narrating emotions, tension and stress are reduced). The groups can also include individuals who have ended their caregiver role after the death of the care recipient; in such cases, the group is helpful in the process of grief and the loss of the caregiver role. Holmerová (2009) summarizes findings on the operation of the Czech Alzheimer’s society’s self-help group as follows: family caregivers in the group, with the support of a professional worker, exchange experiences and emotional events and together seek solutions to practical problems. Caregivers provide support to one another. It is precisely this support and exchange of relevant information that is key to reducing caregiver burden and stress.

According to German experience, Annett Kruger (2012) evaluates meetings in open support groups for family caregivers as exchanges of shared experiences, ideas, and tips. It is an informal exchange of ideas and information, reducing social isolation, developing new social contacts, and strengthening the social skills of participants. Group participants gain time for themselves again and learn to cope better with stress. The sense of a lack of privacy and space to process burden is common among relatives, which is also confirmed by the earlier empirical study by Braun et al. (2008). Even at that time, findings from the study called for an urgent need to strengthen and modify support, psychotherapeutic, or preventive programs for relatives of people with dementia in Germany.

The English researcher Potts (2005) addresses the history of online support groups (OSGs) worldwide, which emerged as early as 1982 compared with face-to-face support groups. They are online communities in which people with a shared problem are active, especially related to health or other social events. These online groups provide space for mutual support and information exchange, greater anonymity, and especially space for inhibited persons. In online support groups, personal experience has greater value than evidence-based access. At these groups, there is a risk of misinformation and increased risk of negative informational influence on individuals. Online support groups are in the form of self-help groups, i.e., without a facilitator. Interested people sharing opinions and experiences work without professional intervention. Online support groups are currently used in virtual spaces for various target groups, often combined with face-to-face support groups that meet in person and regularly at a specific place. Organizations founding support groups often offer a combination of online groups and physical support groups. In general, such self-help groups have far fewer confrontations and far more positive supportive expressions. They are open, accessible groups that offer psychological support to anyone who shares problems and the same themes in the group. Members are both providers and recipients of support. In general, groups are more oriented toward information available from group members than from external experts. (Yalom, Leszcz, 2007)

The Alzheimer’s Association in the USA brings together all nonprofit organizations providing voluntary healthcare, support, and research focused on Alzheimer’s disease. It presents support groups for caregivers, family, and friends of people with dementia, giving them a safe space to develop mutual support, exchange practical information, coping methods, and emotions, needs, and interests. These groups are led by trained professionals. Besides caregiver support groups, it also offers support groups specifically for people in early stages of Alzheimer’s disease. It also has an online counseling service for people who prefer virtual space over face-to-face meetings. (www.alz.org)

In Slovak conditions we meet two terms that, in public and in professional circles, are often used as synonyms of support group — self-help group. Hejzlarová (2011) emphasizes the difference between self-help groups without professional support (self-help groups) and support groups led by professionals (support groups). Unlike a self-help group, where initiative comes from people affected by a shared problem, a support group is founded and led by a professional. In practice, support groups are very often in some way linked to social service providers or other organizations. A positive aspect of this is stable support infrastructure for groups, easier accumulation and later transfer of experiences as the group develops, and the potential for professional oversight. According to Schavel (2012), a self-help group is an informal grouping of several people brought together by similar fate, life situations, or comparable difficulties. Self-help groups usually operate through regular, mutual, and equal conversations without professional leadership. Members of a self-help group mutually strengthen and reinforce their sense of mutual value through their relationships and interactions. Brenkus et al. (2005, p. 23) categorize self-help groups into: groups focused on loss or transitional phases of life (loss of someone close or seeking a new meaning in life); groups focused on “moving forward” — growth (for family members of people with mental illness); and stress management and support groups (for persons with a specific diagnosis of mental illness). According to Brenkus (2005), an advantage of a self-help group is that a member becomes a helper who helps others solve problems. Their dependence on help from another person is much smaller. A member of a self-help group gains a sense of usefulness and, while giving advice and sharing experience, can observe their own problem from a distance.

Professionals who lead support groups often have various roles: they are “catalysts,” facilitators, counselors, mediators, or life guides. It is important for professionals to remain empathetic people and to express joy in mutual presence without heavy interventions and without imposing solutions. In supporting and “caring for” family caregivers, it is always important that the family caregiver gains positive self-esteem, insight into how they can help themselves, and can identify possible interventions, look for similar groups of people, set realistic goals, ask for help without hesitation, communicate correctly with other family members and friends, take care of their own health, avoid destructive behavior, maintain self-esteem, and so on. A support group is a space where people can communicate with each other, experience and ventilate feelings of joy and frustration, while simultaneously giving and receiving social support and help. The common social problem, shared affinity, and overcoming fears related to one’s own social problem are the goals of support groups. Caring for a person with Alzheimer’s disease brings moments of worry, sadness, and helplessness. Tavel (2009) emphasizes that counseling and support or self-help groups for caregivers providing care to people with dementia postpone institutionalization of a person with Alzheimer’s disease by one year.

These specific examples from abroad and Slovakia are intended to illustrate the lack of consensus among experts regarding the delimitation of support and self-help groups. In both cases, the essence is preserved. These are always assemblages of people with the same problem who meet in a defined space (real or virtual) and where they engage in shared information exchange. The principles are the same, but methods of group work differ.

Support groups for family members of people with dementia in Slovakia According to Bušová et al. (2011), there is a network of diverse services for persons who are dependent on others’ help. The problem is that dependent older persons, their family members, and often even professionals from different sectors do not have sufficient information about them. Fertaľová et al. (2011) also emphasize that sufficient information about support forms for chronically ill older persons and their families in health and social sectors is the basis for a higher-quality management of care in the home environment. They also point to the urgent need to strengthen support and preventive programs for family caregivers as well as care recipients. We agree with the authors’ findings and also state that it is important to spread awareness of the existence of counseling and support groups.

Support groups that bring together persons caring for their older relatives (adult children caring for their parents in senior age) are only at their initial stage under Slovak conditions. In 2016, the Slovak Alzheimer Society reports five functioning contact points—support groups across Slovakia. Coverage and year of establishment are as follows: Slovenská Alzheimerova spoločnosť, n.o., Bratislava (founded in 1998 and, with minor interruptions, functioning to this day), Aptet, n.o. Levice (founded 18.11.2014), Špecializované zariadenie Domov Márie, Banská Štiavnica (founded 3.11.2011), DSS Subsídium Rožňava (founded 21.01.2014), and SPOĽACH, o.z. Banská Bystrica, whose founding is dated 22.6.2011.

For illustration, we present the establishment and regular operation of a support group in Banská Bystrica. The support group

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(the first letters of each word create this name) originated from the initiative of family caregivers who frequently came with recurrent questions about caregiving from employees of local government offices. The trigger for the emergence of the first informal support group was precisely these relatives, who expressed dissatisfaction with the lack of information on disease progression from treating specialist doctors and the corresponding care. The information available at that time on internet sites had no coherent form and was, for many relatives, “just one more burden in their already chaotic situation.” In 2012, a formal support group was established as a civic association with the same name, SPOĽACH, o.z., mainly due to the need for official oversight of the previously informal group. Formalization was also beneficial for the founders because it allowed access to funding for the existence and functioning of the support group. The mission of the civil association SPOĽACH is to improve the quality of life of people with Alzheimer’s disease and dementia of various etiologies through help, support, education, and service provision to these persons. In addition to the support group, SPOĽACH provides counseling in the field of caring for people with dementia of various types of etiology, and offers education and memory training.

The support group consists of family members of people with Alzheimer’s disease who care for their relatives primarily in the home setting or in a combination of ambulatory and community-based social services. Education is provided by invited experts from various fields of medicine, remedial pedagogy, psychology, social work, and law. The information offered on methods of communication, caregiving, and the disease itself has an interdisciplinary, professional, and at the same time personal character. Interdisciplinarity is fulfilled through participation of professionals from the field of person care and by presenting topics related to Alzheimer-type dementia or dementias of different etiologies. The professional aspect is also provided by the founders, who are helping professionals in social work with older adults with many years of practical experience and appropriate higher education. The personal character is expressed in the targeting of counseling and support to members of the group, as well as to individuals. In these ways, the idea of comprehensive assistance is realized. Family members obtain diverse information from professionals from various perspectives, complemented by their lived experiences and corresponding experiences. Counseling in the support group is expected to be continued as further informational support for the wider family and close persons around the affected senior. Of special note is the increase in the average number of participants in the support group, which rose 3.5 times over five years, mirroring statistics on persons affected by dementia syndrome of different types. By creating and regularly maintaining a space for the support group to function, SPOĽACH contributes to preventive intervention in caregiver burnout and to reducing caregiver burden. Chien (2011) confirms that participation in groups improves caregiver well-being, reduces depressive symptoms and subjective burden, and improves social outcomes of caregiving. Fertaľová et al. (2011) also view social support received by caregivers from their surroundings as an important protective factor that lowers their level of stress experiences. In the SPOĽACH support group, facilitators emphasize a relaxed, friendly, and yet confidential atmosphere and openly focus on the family caregivers themselves (on their experiences and everyday functioning), while questions directed specifically at their close person with Alzheimer’s dementia are addressed less directly. Through regular participation and empathetic interest in family caregivers, facilitators contribute to strengthening the caregivers’ own identity as a person who deserves human concern and understanding.

Conclusion

Janečková (2013) emphasizes that family members represent for most seniors a basic source of certainty, sharing, social inclusion, and meaning in life. Relatives are also a significant source of inspiration, improvement in the quality of care for helping professionals, and a core pillar in care for a chronically ill long-term family member. From this follows the need for the same level of attention to both seniors and their family members. Strengthening the competencies of family members by helping professionals can contribute to fulfilling important aspects of their mutual relationship. In the broader context of relationship maintenance, this contributes to delaying institutional placement of a senior with dementia and to supporting the functioning of senior family life, either independently or within the family context. The burden of care provided to a chronically ill family member should be distributed across three entities: the state (primarily inpatient nursing care in hospitals), the community in the sense of community social services (ambulatory and field social services), and the family. In such a model, help and care would be distributed in a complementary way, with support directed to the family member with the condition and their family caregiver.

Support groups create social capital as the creation of a safe space for shared emotional exchange and experience sharing. The linkage of lay and professional accompaniment, support, and help for a specific target group of family members of people with dementia, together with this working example of the SPOĽACH support group in Banská Bystrica, creates a perspective for developing social work possibilities in a specific location through social networking and the development of community social services as a complement to public services. Social work with families with seniors faces many challenges. One of them is creating a network of support groups for family members who feel a need for mutual help under professional leadership, with opportunities for self-help, personal development, and education in the specific area of caring for people with Alzheimer’s dementia.

Author: PhDr. Miroslava Tokovská, PhD The author works as an Associate Professor at a Norwegian university. Her professional domain is social services for seniors and social work with seniors, family members of seniors, activation of persons with dementia syndrome and other illnesses. She has published works on senior care in the context of social work, care for the person in the context of selected helping professions, memory and mobility training, active aging from a perspective of spectrum, activation of seniors with dementia, and cognitive and psychomotor activation in helping professions. List of references

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