Feelings Experienced by Informal Caregivers of Patients with Dementia, from the Moment of Diagnosis Until the Beginning of Psychotherapy

Research Article

J Fam Med. 2021; 8(3): 1248.

Feelings Experienced by Informal Caregivers of Patients with Dementia, from the Moment of Diagnosis Until the Beginning of Psychotherapy

Makri M1,3*, Sourgouni E2, Tsatali M1 and Tsolaki M1,3

¹Greek Association of Alzheimer Disease and Related Disorders, Thessaloniki, Greece

²Aristotle University of Thessaloniki, Faculty of Philosophy, School of Psychology, Thessaloniki, Greece

³Aristotle University of Thessaloniki, Faculty of Medicine, School of Neuroscience, Thessaloniki, Greece

*Corresponding author: Makri M, Greek Association of Alzheimer Disease and Related Disorders, 13 P. Sindika Street, Analipsi, Thessaloniki, P.C. 54643, Greece

Received: March 10, 2021; Accepted: April 14, 2021; Published: April 21, 2021


When dementia is diagnosed, specific emotions, crucial for the postdiagnostic experience, emerge in the family members of the person with dementia. The present study investigated feelings about the diagnosis at the time of its announcement as well as the feelings that urged family members to get involved in counseling sessions or delay seeking help. Semi-structured interviews were conducted with nine participants recruited from an Alzheimer Association. Three key topics emerged from the analysis: "Experiencing the diagnosis", "Experiencing dementia" and "Understanding psychotherapy". The three topics included five, three, and three specific sub-topics, respectively. Most participants reported having feelings of loss, a sense of helplessness, and feelings of responsibility and trauma that were followed by a period of loneliness. They also reported having developed defenses and having reached their limits. All participants perceived psychotherapy as a means of bringing relief, a sense of sharing, empowerment, and an opportunity for openness.

Keywords: Alzheimer's disease; Dementia; Family caregivers; Feelings; Diagnosis; Counseling


PwD: People with Dementia; Alzheimer Hellas, DCCSH: Greek Association of Alzheimer’s Disease and Related Disorders’ Day Care Centre “Saint Helen”


Alzheimer’s Disease (AD) is a devastating disease that affects more than 50 million people worldwide. This number is expected to double every 20 years, reaching 75 million in 2030 and more than 150 million in 2050 [1]. The statistics related to AD and its effect on patients, their family, and the entire health-care system are staggering [2]. In 2018, more than 16.1 million caregivers provided an estimated 18.4 billion hours of unpaid care. However, AD costs to caregivers more than just their time. Some family members spend more than $10,000 a year caring for the person living with AD, whereas in 2018 AD and other dementias were estimated to cost approximately $277 billion to each nation [3].

It should be noted, however, that the impact of the AD diagnosis on caregivers is multifaceted. Besides the financial impact onto the entire health-care system [4], the AD diagnosis puts increasingly more emotional strain on family and caregivers, even from the diagnosis announcement [5]. Specifically, the sense of safety and security is shaken, the sense of continuity is disturbed, whereas the future seems uncertain [6]. According to recent findings, caregivers, at the time of diagnosis, experience sudden changes in their relationships and family structure, whereas they anticipate an uncertain future [7-10]. Moreover, during caregiving, caregivers often report high levels of stress, low self-esteem, low sense of well-being, depressive symptomatology, increased levels of burden, compromised physical health, and, sometimes, premature death is noted [11-13]. In other words, caregivers suffer from many psychological problems as well as changes in social relationships.

Diagnosis is seen as a multidisciplinary process, which also involves the collaboration between physicians, People with Dementia (PwD), and their families. According to an influential report by the Alzheimer's Disease International Organization [14], «national dementia strategies should promote early diagnosis and intervention». It is worth noting that families of PwD need a timely diagnosis, in order patients and their caregivers be able to understand the care plan and comply with the medical guidelines as the disease progresses [15,16]. Also, the way in which the diagnosis is announced, as well as the support provided after the diagnosis, can impact on caregivers’ adjustment during care [14,17]. However, the social stigma related to dementia is often seen as a major obstacle for timely diagnosis and support [18], because general practitioners and the public are not sufficiently informed about dementia.

To conclude, according to Iliffe et al. (2003) [19], clinicians need to be trained how to announce the diagnosis, provide up-to-date guidelines about the post-diagnosis care and support, and provide the caregivers an individualized care plan according to each patient’s needs. It is suggested that if provided with adequate support, the feelings of shock, grief, anger, and loss that PwD and families may experience, can be counteracted by feelings of reassurance and empowerment [14,20]. On the other hand, the more anxiety and guilt more caregivers feel, the more likely they are to use defensive mechanisms in order to cope with the negative emotions and to seek support [21]. It has also been found that caregivers’ reluctance to discuss family issues and health problems is associated with less social and emotional support received [21]. Being aware of their concerns, needs, and feelings, caregivers are more willing to seek help in their social network as well as in the social services [3]. Over the last decades, numerous psychosocial interventions, necessary for the caregivers’ support, have been developed [22] enhancing self-efficacy, coping, mastery and positive effects on caregivers’ wellbeing [23].

Lastly, the circumstances under which the announcement of the diagnosis takes place, as well as the caregivers’ first feelings and needs, are an under-developed research area. Some research findings on the post-diagnostic experience of PwD and their caregivers have revealed that a major issue for both of them is the meaning of post-diagnostic life and the adjustment to loss [24-26].

Our research aimed at providing an in-depth understanding of the first emotions of caregivers of PwD after the diagnosis of AD and their development until psychotherapy starts. Specifically, we focused, firstly, on the possible stages of the development of caregivers’ emotions and analyzed caregivers’ cognitive appraisals and experiences, from the time the diagnosis was announced to the beginning of psychotherapy. Secondly, the time passed from the first announcement of diagnosis until the decision to ask psychological support was measured along with the feelings that prompted caregivers to this decision, or made them delay from seeking help. Finally, the present study investigated caregivers’ comprehension, beliefs and attitudes about psychotherapy, as well as their expectations from starting psychotherapy.



The study employed a qualitative analysis of interviews with caregivers of PwD. The data were analyzed in accordance with the principles of Interpretative Phenomenological Analysis (IPA). This methodology was chosen because it has been used in the study of caregiving experiences from the participants’ personal perspective [27,28]. Specific topics reflecting the caregivers' experiences were identified by the researchers and based on previous research. The interviews took place at the beginning of the study. The questions included how caregivers of PwD felt at the time of diagnosis, how their emotions were changing over time, and when they started psychotherapy.


The study took place at the Greek Association of Alzheimer’s Disease and Related Disorders’ Day Care Centre “Saint Helen” (Alzheimer Hellas, DCCSH) at Thessaloniki. Ethical approval was given by the DCCSH ethics committee. The interviews were carried out between March and May 2017.

Participants had visited the Caregiver Center at the DCCSH, in order to participate in the psychoeducational and psychotherapy interventions which are implemented especially for this population. The researcher was initially given a list of 15 prospective participants, who met the study’s eligibility criteria, by the psychologists who were responsible for the implementation of the program. The potential participants were invited to participate in the survey by telephone. Nine of them agreed to participate. The interview meetings took place after psychotherapeutic group sessions and/or an independent day at their convenience. Participation was voluntary and participants were informed about the aims of the study prior to their inclusion in the group.

All interviews were individually conducted, each lasting 40–50 minutes.


The sample comprised nine participants, seven of them were women, who were caregivers of PwD [29]. The mean age of the participants was (M=52,33 SD=12,45 range=34). The main criteria for the participants’ recruitment were that, (a) all participants were caregivers of PwD in mild and moderate stages. This means that the average time between diagnosis and the participation to the study was 5 years (M=5,33 SD=1,80 range=5); (b) all participants were receiving counseling support at the Caregivers’ Center and had only recently started joining the support groups (M=1,55 SD=0,52 range=1). The names of the participants were confidential. Each of them has been given a code (P1-P9) in order to maintain confidentiality. The demographics of the sample are shown in Table 1.

Citation:Makri M, Sourgouni E, Tsatali M and Tsolaki M. Feelings Experienced by Informal Caregivers of Patients with Dementia, from the Moment of Diagnosis Until the Beginning of Psychotherapy. J Fam Med. 2021; 8(3): 1248.