In this study, 12 family caregivers (8 females, 4 males) who were responsible for the care of the elderly with dementia participated in 14 interviews. The mean and standard deviation of these age groups was 61.8 ± 8.94 in the age range of 47 to 74 years old. The demographic characteristics of the participants in this section of the study are shown in Table 1.
The results of the qualitative analysis of the six main categories include “perceived burden”, “Losses and Threats” “satisfaction with care” “Personal growth” “caregiving gains” “philosophy of care” and 22 subcategories (Table 2). These subcategories and categories result from the experience and understanding of family caregivers of the care provided. We will continue to explain and provide quotes for each of these categories.
The perceived burden of care is as one of the most important negative aspects of the caregivers’ caregiving of the elderly with dementia in Iran so that there were some aspects in all of them and the caregiver’s experience of caring for various physical, emotional, financial, and occupational fields was experienced. Caregivers expressed their physical and emotional experiences with physical problems, such as back pain, headache, knee pain, blood pressure, heart disease, and obsessive-compulsive disorder, as well as feeling tired or weak, taking medication or increasing the dose of medication.
“I cannot do it like before, now my neck aches, my back aches, I got a neck disc. My forgetfulness is too much. This forgetfulness is annoying me so much.” (P7)
In addition to physical burden, the emotional burden of care, which was considerable for on caregivers, expressed their experiences with such things as feelings of grief, depression, feelings of isolation, feelings of intrusion and imprisonment, and inability to persevere care by family caregivers.
“Now I have reached a stage where I don’t have the power. I feel very tired mentally; sometimes I feel I cannot continue.” (P1)
Caregivers believed that care limited their social relationships and reduced their social and recreational activities, and had a negative assessment of their care.
“The other impact is that I cannot use the social, greetings, and other things that one uses when he\she is free. I can’t be in touch with my previous colleagues. I’m an isolated person away from the community now, but I was always in the society before and I was dealing with everyone "(P8)
Caregivers described financial burdens caused by the care with financial problems, such as reduced income and increased living expenses, such as the cost of drugs and patient care expenditure, which was seen this time for most of these people.
“Since my wife’s been so, I have to stay at home more often and less to work. I left the work to the rest, but nobody pays attention to the work like me. The expense of this illness is also very high, especially the nurse’s money that cares for her, I had to sell whatever I had and spend for all these years. My income is reduced and our living costs are also increased. The government also does not support us.”(P2)
Other negative experiences of caregivers were the burden of occupational care, which was shown as a loss of the full-time job in a form such as reducing working hours, leaving the service.
“The odd days are allocated to her physiotherapy, I have to stay home more and go to work later, I can only stay at work for only a few hours, I must go back home so my mother is not alone.” (P6)
Losses and Threats
Most caregivers, especially those caring their spouse experienced a kind of loss and threat in their care and assessment of the caring role. These deficiencies and threats are categorized in various fields related to the caregiver and the caregiver, who have subclasses such as familial affairs, lack of opportunity, and gradual loss of the patient.
Internal conflicts arose between caregivers and other family members for various reasons. Some of the reasons for these conflicts were the interference that had taken care of the home, the unwillingness of the children to the patient, and the continued caring of other caregivers to the main caregiver over their duties.
“My kids always complain. They are so upset. They say became old. Give a little to us, and our kids. They are always grumbling about the house and keeping the grandmothers here.”(P7)
The caregivers’ experiences showed that there is no opportunity for them to meet their needs because of caregiving. This was the loss and threat to lose their calm and to think that they had lost their calm. They had somehow lost their privacy and were always under pressure to play this role. In expressing this experience, they claimed that the individual liberty was taken from them with this care, so that they did not have time for themselves and their desires, and over time, they lost their identity.
“I cannot lie down at my house, because whenever he\she is not in my sight, he\she is sabotaging. I have no time for myself to say now I can go to do my work now” (P10).
In addition to these deficiencies, the participants in this study talked about the experience of a sense of sadness caused by the gradual loss of their dear. As if, they are mourning before their death. Some caregivers said that despite the physical presence of the patient, they could not grasp the true nature of the patient and have lost the ability to communicate and talk with the caregiver. They also said that they felt that they had lost their lives, which was a painful experience for them; such experiences were seen in the care of spouses.
“Every day he\she gets worse; it is as if he\she is not goanna being better. Now, what can I do with someone who cannot speak and has many problems? Please, imagine the situation for some moment. I feel very painful.”(P9)
Satisfaction with care
Almost most family caregivers pointed out their satisfaction with expressing their experiences of care assessment. Caregivers have argued that care is worth all this stress, and these moments are sweet, especially when you look at your dear’s smile, and you feel relaxed with it. Subclasses achieved such as self-satisfaction, satisfaction with the patient’s condition, and satisfaction from the patient’s appreciation of interviewing caregivers.
In expressing his\her own sense of satisfaction, he\she said, “I feel pleased with the sense of satisfaction. When a person is satisfied with his\her performance, she feels great satisfaction because I feel that I’m doing a positive thing. I’m doing the right thing, I got the right decision. My activity is with love and sincerity.”
In describing the sense of satisfaction for the condition of the patient (P6) said, “Nothing makes me relief as much as I see my mother calm and her good condition. I’m glad that I am beside her and I can help her.”
In expressing satisfaction of the patient’s gratitude (P7) said, "Sometimes, I look at her for and she looks me then very kindly because she liked me very much. I feel like she loves me pleased with me. I feel satisfied with myself here.”
One of the most prominent positive effects of care for dementia patients was the personal growth for family caregivers. Individual growth classes were found in sub-class caregivers such as maturation feelings, highlighting positive personality traits, and spiritual growth.
In the description of the sense of maturation, participants stated that care increased their awareness and the surrounding environment and increased their understanding.
“Now I became more knowledgeable. I became more aware of my mother’s love and understood it. I realized that now that I am here because of my mother’s sacrifice. This makes me mature. This understanding brings awareness that I think I got it. I reached all this, I realized the love of my mother to myself, I realized that my mother was a gift of God, maybe I did not understand it before. This disease made me understand that.”(P6)
Being under difficult conditions for caregivers has resulted in positive personality characteristics such as being patient, strong and resistant to hardships, calming down, enhancing the sense of altruism and helping people in need.
“Well, I got stronger, I became more patient, I became calmer. I can handle the hard conditions more easily” (P5)
Caregivers described their spiritual growth by expressing things such as changing attitudes to life and re-valuating what is, trusting and hoping for God’s bless, finding the life path, thanking God and his blessings, knowing the magnitude of life, feeling close to God, which was formed during this period.
“Now a lot of things have changed, I appreciate more of life, I appreciate what God has given me and I appreciate my health much more than before, perhaps I a little neglected, thank God for all of this.” (P3)
Caregivers expressed various experiences in the context of the gains of their roles as a caregiver. These gains included issues such as social affirmation by others and mastery in their role as caregivers.
She described social acceptance (P3) as “We live in a small area and everyone knows each other. They all see that we keep our mother and they recall us with goodness. When a stranger sees me, encourages me. Everyone in our area has a good idea about us.”
In expressing the feeling of mastery in care, caregivers’ experience was combined with things such as increasing the self-esteem, gaining a sense of ability and self-control in providing care, taking care with the whole power, doing the best in caregiving, considering this work at the first grade.
“Now, I feel that I became a master in my work because I am doing it for 6 years lonely. Now I can hold a class for others to guide them.” (P9)
“I usually manage my mother’s work, I’m happy because I can do it. I can do my mother’s works. I feel I can accept more responsibility than this.” (P3)
The philosophy of care
The Iranian family caregivers participating in this study referred to the acceptance of the role of care in expressing their own experiences of caring for their ideology; this ideology was categorized into three subcategories of being a pattern for others (spouses and children), reciprocal compensation, and the preservation and continuity of religious and family traditions. Caregivers often mentioned a combination of these reasons derived from the beliefs and value system in which they were educated and developed. The description of being a pattern for others, especially their children, (P7), stated "My children see this and learn. My husband pays attention to parents and I think I have a good effect on my child’s upbringing.”
From the viewpoint of Iranian caregivers, care provided a chance for reciprocal compensation of the person who is receiving the care always emphasizing that his\her previous effort should be compensated in some way.
“I’m doing my best for my mother. She is my mother, my dear, she raised us. She accompanied my father. I saw how she tried hard for her life. Now, I think I must do it because she accompanied my father very much, she was a good woman, sacrificed herself in her life.” (P4)
In addition, Iranian caregivers considered it a godly thing to take care of the family with the family traditions and the obligations that people in the family had with each other, and with this kind of care, they were somehow committed to religious and family traditions.
“The commitment of my husband and wife is not just when they are healthy. No one can see the end. I can’t ignore my wife because of the moral and family commitment I have to my wife.” (P2)