Interventions for Caregivers of People with Dementia in Greece

Special Article – Family Caregivers

J Fam Med. 2017; 4(5): 1125.

Interventions for Caregivers of People with Dementia in Greece

Karagiozi K¹*, Margaritidou P¹, Egkiazarova M¹, Toumpalidou M¹, Makri M¹ and Tsolaki M1,2

¹Alzheimer Hellas, Thessaloniki, Greece

²3rd Department of Neurology, Faculty of Medicine, Aristotle University of Thessaloniki, Greece

*Corresponding author: KaragioziK, Alzheimer Hellas, 13 PetrouSindikastr., P.C. 54643, Thessaloniki, Greece

Received: August 01, 2017; Accepted: August 24, 2017; Published: August 31, 2017


Recent researches have shown that intervention programs are essential in order to facilitate the caregivers’ role and improve their emotional state and quality of life. This study presents the therapeutic interventions that are provided in the Day Center for Caregivers of Greek Association of Alzheimer Disease and Related Disorders (Alzheimer Hellas). Day Center for Caregivers is established in order to give psycho-educational and psychological support to dementia caregivers. Participating in therapeutic interventions caregivers learn to take care of the people with dementia and themselves physically and emotionally.

Keywords: Caregivers; Dementia; Interventions; Day center


Dementia is considered to be one of the major public health challenges worldwide. Nowadays, it affects more than 47 million people all over the world and it is on the increase due to the aging of the population [1]. Quality of life of the patients with dementia (PwD) and their caregivers as well as the society in general are also seriously affected [2]. In generally, dementia demands high levels of care, most of which is provided by family or informal caregivers. Without their help, PwD would have poorer quality of life and thus institutionalization will be increased more quickly. Moreover, national economies would be strongly affected by the increasing demographic tendency [3].

Caregiving does bring personal gains and feeling of fulfillment. However, according to the research findings, family caregivers are extremely vulnerable [4]. They are usually members of the family who undertake the role out of necessity or obligation [5] and also, their role is extremely critical [6]. They are people who are indispensable to maximize well-being of their care recipient, since caregivers are best placed to identify their personal needs and desires with a unique way and thus emerge the person-centered care like the most significant [7]. The caregiver is commonly female, of rather low education, living with the care recipient, spends a lot of hours caregiving and thus, they seem to have their emotional, physical, social and financial needs unfulfilled [8]. In line with other research, caregivers often report high levels of stress which affects them by feelings of low self-esteem, low sense of well-being, depression, sense of burden, compromised physical health and sometimes premature death [9,10,11]. Apart from psychological problems, social relationships change and psychosocial health may cause immunological dysfunctions to caregivers [12]. Consequently, despite the fact that some caregivers experience feelings of personal gain and satisfaction, they need psychosocial and instrumental support to cope with caregiving [9,13].

Over the last decades, in order to support caregivers, numerous psychosocial interventions, necessary for the support of the caregivers, have been developed [14]. Systematic reviews and meta-analyses nominate mixed results with respect to the effectiveness of these interventions on caregiver mood or burden [15,16]. Self-efficacy, coping, mastery, depressive symptoms, emotional distress, burden and quality of life are some of the outcomes referred as positive effects and are major endpoints [14]. Also, according to other studies, most of the heterogeneous interventions have been evaluated and found to be effective to some extent [7]. Empirical evidence of effectiveness has been indicated on the caregiver’s mental health, delay of deterioration of illness condition and institutionalization of the care recipient [12].

Interventions designed to help caregivers have been developed in various forms, such as individualized, family or group programs, and in various contexts, such as face to face interventions in Care Center or home meetings, telephone, videophones and web-based services. Multiple helping strategies such as information giving, training on problem solving skills, social support and techniques to better manage with stress in order to improve the caregivers’ knowledge and skills should be involved in these interventions [3,12,15,17].

The Greek Association of Alzheimer Disease and Relative Disorders (Alzheimer Hellas) is a non for profit organization that was founded in 1995. Today, Alzheimer Hellas operates 2 Day Care Centers in Thessaloniki and has over 6.000 members. The first Day Care Center for PwD, encompasses a Day center for caregivers and a home care unit, was established in 2007 and the second in 2009. The goals of the Greek Association of Alzheimer’s Disease is 1) the early diagnosis of dementia by scientists, 2) the promotion of research, 3) the education and training for all the stakeholders, 4) the development of Care Units for patients with Alzheimer’s Disease, 5) the provision of useful information and advice (24hour help-line) on dementia problems (caring, legal or financial issues), 6) the presentation of lectures by health professionals and informal caregivers, covering all aspects of Alzheimer Disease and (7) the development of professional seminars.

Day centers for caregivers were established in order to give support and counselling to caregivers concerning the care of the PwD. From 2008, more than 3.000 caregivers have participated in a lot of different interventions. The supportive interventions have been developed in various forms, such as face to face and online form, in order to meet the needs of the population of the caregivers. The interventions provided to caregivers are (a) psycho-educational group, (b), online psychoeducational group, (c) family support intervention, (d)psychological support group, (e) support group using literature entitled “Listen to my story”, (f) "theater of the oppressed", (g) relaxation intervention, (h) grief support group, and (i) community outreach: intervention for children entitled “Who I am grandpa?” and radio program “All about dementia”.

Interventions for Caregivers

A) Psycho-educational group

Psycho-educational group program aims to provide information to caregivers regarding the disease and guidelines for more effective care. It helps caregivers in making difficult decisions that concern the care and the treatment of their care receivers and they learn to be flexible in the negotiation of alternative solutions [18]. According to Hsu et al. [19] caregivers may have sustained benefit of reducing burden, decreasing psychological morbidity and enhancing psychological wellbeing after attending a psycho-educational intervention.

Alzheimer Hellas provides a psycho-educational group intervention which consists of 24 weekly sessions, each lasting 60 minutes, for 6 months. In order to examine the effectiveness of this intervention, each participant is assessed before and after the 6-month period of the study. The scheduled topics of the lessons are a) general information about the disease (what is dementia, what are the types of dementia, risk and protective factors etc.), b) behavioral symptoms of dementia (types of behavioral symptoms, practical solutions, which non-pharmacological interventions are better etc.) and c) caregiver’s wellness (what is the role of the caregiver, usual feelings in caregiving, the role of the family etc.). Participants are encouraged to be actively involved throughout the sessions by asking questions regarding patients or themselves, sharing their experiences and providing guidance and support to other caregivers.

B) Online psycho-educational group

Online psycho-educational intervention has been applied in order to face the problem of underutilization of traditional support services from caregivers. Health issues, transportation and time constraints were the reasons for non-participation in traditional support groups. According to Kales et al. [20] the available face to face interventions have been proved to be effective but only for a limited period of time, and they have also been found to be time consuming, which is limited to caregivers. Using online intervention, the caregivers can be in contact with other members while they can stay at their homes. This is an essential opportunity for Greek caregivers to engage in social interaction and support, as in most of the small towns, a professional help would be a real challenge to find. The online psycho-educational intervention is being provided via video conference group which has been created as a substitute for face to face psychotherapeutic interventions. According to Marzipali & Garcia [5], video conference group showed more significant improvement in caregivers’ wellbeing and lower stress response than the online support chat did.

The aim of online psycho-educational intervention is to educate caregivers about the disease, to provide a better treatment and to help participants to share their experiences and thoughts within the group. Therefore, the intervention aims to reduce the anxiety and depression symptoms and the sense of burden that the caregivers usually face.

The intervention takes place once a week (at the same time and day every week for each group) and lasts for one hour. Participants attend 24 video conference sessions (6 months). In order to examine the effectiveness of intervention, each participant is assessed before and after the 6-month period of the study. The content of the psychoeducational sessions are the same with the face to face psychoeducational group intervention. The scheduled topics of the lessons are a) Covering general information about the disease (what is dementia, what types of dementia are there, who may suffer from dementia etc.), b) behavioral problems of the PwD (which are the psychiatric and behavioral problems, what can we do about them, which drugs should we use, which non-pharmacological interventions are better etc.) and c) about the caregiver’s wellness (what is the role of the caregiver, how does the caregiver feels, how important is the role of the family etc.). At the end of each lesson, the psychologist gives the opportunity to the caregivers to talk to each other and share their experience, emotions and thoughts.

Researchers have found internet-based interventions to have a positive effect in improving caregivers’ mental health status and sense of self-efficacy, and reducing the lever of depression and anxiety [5,21,22].

These results are also consistent with our own research. We examined two caregiver groups, an online and a face to face, which attended in a 4-month psycho-educational group intervention. Psychosocial assessment performed before and after the 4-month period of the study comprised of the following scales: Beck Depression Inventory- ?? – BDI-?? [23], Beck Anxiety Inventory – BAI [24] and Zarit Burden Interview [25]. The within group comparison analysis have shown that both the internet-based intervention and face to face intervention reduced the level of anxiety (p=0.000 and p=0.006), depression (p.000 and p.000) and sense of burden (p=0.000 and p=0.013). The analysis between the two groups after the intervention has shown no significant differences in levels of anxiety (p=0.452), depression (p=0.692) and sense of burden (p=0.612). These results have shown that both forms of intervention are effective in improving emotional health as they reduce the level of anxiety, depression and sense of burden. So, online interventions are promising for supporting effectively and accessible the caregivers who cannot utilize traditional group interventions (unpublished data).

C) Family support intervention

When an individual is diagnosed with dementia, the whole family has to reconsider its function and its members have to redefine their personal goals and expectations [26]. A diagnosis has various consequences to the whole family as well as to each member in particular. A functional relationship among caregivers and care recipient is the key for a successful change of roles and the adaptation of the family [27]. Therefore, to face this change, a new balance should be established in the family. In order to achieve this, the support and the constant informing of the family are needed.

Family psychological support aims to help the whole family of PwD to face and cope with the disease and also, to reduce negative feelings and sense of burden. It has been found that families who participate in a support program have a reduction of stress in comparison with control groups [28]. Moreover, it allows the members of the family to express their feelings concerning the disease and the patient [29]. Having to face a lot of duties makes the caregivers very vulnerable to various illnesses and depression. Researchers have approved those families that participate in a program of support show significant reduction of symptoms of depression after 6 months of intervention [30]. Apart from the above, researchers have found that family therapy has a role in preventing caregiver’s burden [31]. Finally, it improves the ability of communication between the members of the family and the PwD. A good relationship depends a lot on communication, which becomes difficult between the care recipient and the members of his/hers family. It is possible through a family support program, for the members to learn more effective ways of communication, aiming at the improvement of the quality of life of the entire family [32].

Having in mind all the above, we have developed a family support intervention, which is addressed to family members of a PwD. The goals of this intervention are the creation of more functional relationships among members of the family, emotional support, ways to deal with the change of roles and the symptoms of dementia, counselling and education on effective communication. Various techniques are used at family sessions, as representation of family communication patterns, reframing, emphasis on the differences and tasks in and out of the session.

We have contacted a pilot study in order to examine the effectiveness of the family support intervention. The study aimed to reduce negative feelings and sense of burden through family psychological support. Participants were 29 families (63 members, 24 men and 39 women) in an experimental group and 63 caregivers (15 men and 48 women) in a control group. Experimental group had a mean age of 44.73 (SD=10.81) years and mean years of education 13.06 (SD=2.90). The groups were matched in age (p=0.162), education (p=0.234) and gender (p=0.053) (Table 1). All of them were evaluated for depression by the Beck Depression Inventory (BDI), anxiety by the Beck Anxiety Inventory (BAI) and sense of burden by the Zarit Burden Interview at baseline and at the end of the intervention. The 29 families attended 24 per two weeks sessions for a period of 12 months. Sessions included education on dementia and approaches for family psychological support. Controls received no psychosocial intervention for the same period. At baseline there were no differences between the two groups in all the measures. At the end of the intervention, differences between groups appeared, in favor of the experimental group, in anxiety (p=0.00), depression (p=0.00) and burden (p=0.00) (Tables 2 and 3). Within group analysis has shown that the experimental group reduced anxiety (p=0.00), depression (p=0.00) and burden (p=0.00) (Table 4). Control group showed aggravation of anxiety (p.017), depression (p.000) and sense of burden (p=0.00). The proposed family psychological support program has reduced negative feelings and sense of burden of the participants.