Two central categories of data analysis were identified: “Family caregivers’ needs related to the management of care for their family member with dementia” and “Personal needs of family caregivers of elderly people with dementia”. Each central category is composed of several sub-themes that will be detailed below.
3.1. Family Caregivers’ Needs Related to the Care of the Relative
3.1.1. Instrumental Support
Family instrumental support: Caregivers feel they should have family instrumental support when they need it; “having someone else” who they can “trust fully” because they know they will react as she or he would. They need someone to help them with more physically demanding care, especially for older and/or sick caregivers.
“Knowing that a person is going to react the same way you do.” (Martos)
“Well, here most of them are old people, and others who are not so old, with a disability of 55%, and then you have your disability, but at the same time you have to take care of a person who is 84 years old. We need someone to help us.” (San Felipe)
On the other hand, the caregivers need someone to replace them at certain moments, even though they sometimes feel bad about asking for help. Caregivers say that the care of a family member with dementia “takes another form” if the care is shared with the rest of the family.
“My daughter is 14 years old, and I ask her to stay with Grandma, but she starts to complain; what am I to do?” (Torres)
“At first, I took care of my mother on my own, but since it got worse, I spoke to my brothers and thanks to them we are doing very well.” (Martos)
3.1.2. Formal Support
Instrumental support from paid and non-professional caregivers: Family caregivers also value aid from paid external instrumental support. These external caregivers help in tasks of caring and household chores.
“I have the advantage of the girl who goes for an hour in the morning and later, for another hour, in the evening to put him to bed.” (Arjona)
Respite services: Family caregivers report that they need respite services; i.e., a place where they can leave their family member with dementia for a limited period, either at a regular time or periodically. They recognize the benefits they would gain from using these services, but they limit their use because of their beliefs, social pressure and respect for the care recipient’s preferences.
“I would love to have a place in which, for example, I have to go, I don’t know, that I have a meeting, or I want to have a coffee with my friends, that means I’m going to leave him there comfortably for 2 h and then pick him up later.” (Martos)
“If I took him to a nursing home for a month, it’d do me a lot, although I don’t know. I wouldn’t feel comfortable.” (Torres)
Support from socio-sanitary professionals: Family caregivers need the support of reference socio-sanitary professionals and demand regular follow-ups from the sick person. They highlight the importance of professionals responding quickly and effectively at critical moments, and of having the same professional care for their family member with dementia. In addition, they underline the humane and patient treatment they should have. They emphasize the need for professionals to learn more about dementia and can inform and teach them.
“They (socio-sanitary professionals) should go at least once a month; it’s not that they don’t show up, they don’t show up for anything.” (Andújar)
“I am thrilled with this. Because when it has really been necessary, they throw themselves into it immediately.” (Andújar)
Support from social and health organizations: Caregivers need the support of social and health organizations to speed up the process of diagnosis of their family member and exhaustive and professional assessments from social and health personnel to intervene and provide effective treatments to their family member with dementia.
“When they admit you into hospital, there are nurses who are charming, but there are others who do not have much endurance.” (La Magdalena)
“It takes a long time while they tell you what the disease is, among doctors, with this and that, and then they diagnose it to her.” (La Magdalena)
Access to resources: Caregivers stress the importance of public services being better resourced to facilitate infrastructural adaptations, physical support from external caregivers and the provision of technical assistance to those in need, and of resources arriving at the right time.
“I know that the resources they have are very limited, but I, for instance, asked for things and as they didn’t have them, I felt very overwhelmed.” (Martos)
Practical training in care oriented towards meeting the basic needs of the care recipient: Caregivers report that they need general information about dementia and the resources available, especially at the beginning of care and throughout the care process, due to the course of the disease and progressive changes in the care recipient. They stress that at the beginning of care they do not know where to turn and feel lost.
“Explain to us well how to do things to make them easier for us.” (La Magdalena)
“Having basic information about those daily medications; I think this is very important together with what that women said about holding the patient. It has done a lot for me.” (Andújar)
“(Training) Now and at the beginning, because it varies very much, the change that has taken place is incredible.” (Martos)
“They said to me: “this way” and the person gets up more easily, for them and for you.” (Andújar)
Training to manage special care situations and behavioural problems: Family caregivers also consider the importance of training in specific care when people with dementia are receiving specific treatment. Specifically, they ask for training to manage their family member’s behavioral problems.
“I didn’t know where to pick that (urinary catheter) up, so I tried to connect it; I didn’t know how to do that!” (Andújar)
“To know how to react before a specific situation or, say, if she goes on and on with this so many times, how am I to react?” (Torres)
3.2. Personal Needs of Family Caregivers of Elderly People with Dementia
3.2.1. Own/Personal Life
Disconnect from care: Caregivers feel “tied down”, like slaves of the care recipient, and miss the freedom they once had and have lost by providing care. They point out that they need time for themselves: to rest, to get out and disconnect from care. They see the little time they can devote to “covering other spaces, such as marriage or children” as a theft from the care of their family member and that “the space that is always hollow is the staff”. As a result, caregivers become careless and stress-laden.
“There comes a time when you have no life because you’re looking out for them all day.” (La Magdalena)
“But if you invest that time, and it is true that it is for you, I, in my case, I don’t disconnect, although if I leave, although I go out, my mind is where it shouldn’t be, and it is with her (her mother), no, not me.” (Martos)
Free time, leisure and social life: Due to their dedication to care, caregivers have given up the things they would like to do and even neglected carrying out daily tasks. They need to take the time for themselves and do what they used to do.
“Yes, I miss going out, running errands, going out unhurriedly.” (San Felipe)
“I need that time for myself, for me, as a person to be with my husband, or to enjoy being with friends.” (Martos)
3.2.2. Emotional Support
Caregivers say they need emotional support; others, especially family members, show appreciation, understanding and concern.
“At least get them to understand you, try and put them into your position.” (Andújar)
3.2.3. Acknowledgment by Others
Likewise, caregivers also need recognition of their caregiving labor and sacrifice, including by the care recipient.
“I’ve sacrificed myself and my family, and, nobody gives you the merit.” (Arjona)
“And now she looks at me like dirt, nothing, she looks at me worse than at a maid (her mother), and cries.” (San Felipe)
3.2.4. Satisfaction with Care Labor
Caregivers need to feel that they are doing the right thing to achieve well-being and satisfaction. They try to act according to their moral values to “have a clear conscience”.
“When they are well is when we are well; when they are well, we’re happy.” (Martos)
“I know what I’m doing to my mother is well done: that means I have a clear conscience.” (El Valle)
3.2.5. Psychological Adjustment
Effective coping with the disease: Caregivers report that they need to cope with the illness adequately to be “psychologically prepared for what is to come and to endure”.
“We are unable to understand that they don’t do it to us, it’s just that they don’t know.” (Martos)
“That is what irritates me most: she spends all day screaming, day and night.” (Andújar)
Management of stress and feelings derived from care labor: The cognitive-behavioral problems of the caregiver’s relative (resistance to being cared for, aggressiveness, distrust, runaways, repetition of words, forgetfulness, etc.) are an important source of stress for caregivers. Therefore, they need to manage the stress and feelings of caring for their family member with dementia, such as guilt, insecurity and helplessness, among others, which create discomfort for themselves and their environment.
“Every day I put her to bed, I ask the Lord to take her away, every day, and when I got up I regretted it, thinking how bad I am; that discomfort, for me, has been the worst.” (Andújar)
“I sometimes feel grim, sad to see decadence and I am many times fearful when I forget something, frustrated, very impotent. I don’t know how many times I’ve felt that tension.” (Martos)
Health: Family caregivers report that they need to maintain their health in order to provide appropriate care for a family member with dementia. Previous illnesses of the family caregiver and health problems resulting from the care make it difficult to care for the person with dementia and affect the caregiver’s well-being.
“I don’t do any exercise, I don’t go out, I only use the car, because of course, I go rushing, I go running, the fact is I don’t have time; therefore, I feel as if I’m choking, I need to breathe.” (Martos)
“I’ve been at it for 6 or 7 years and each day gets worse; I’m at a time that I need to be looked after, too.” (San Felipe)
“Physically, I have pains in the leg, waist, I’m continuously on alert and I don’t sleep well.” “I also have stomach trouble, which before I didn’t, and I have headaches, tension and stress, too.” (Martos)
Rest: The caregiver’s continuous state of alertness, constant concern and behavioral problems directly influence the caregiver’s rest and his or her performance as a caregiver.
“I have an obsession, I don’t sleep well at night, I have to take my medication.” (El Valle)
“I don’t sleep at night, and I feel whacked, I am collapsed, I am not useful for anything, I lack any strength.” (Torres)