Ten family caregivers and ten relatives living with advanced progressive disease participated
in the study (Table 1).
Family caregivers ranged from 46 to 78 years of age. Nine of the family caregivers
were married female, and were cohabiting. All were caring for their relatives 24 hours
per day and had done for periods ranging from 1 to 20 years. Five caregivers were
siblings of the person living with advanced disease, two were daughter-in-law, and
one each were sister, husband and niece. Nine were unemployed and providing care for
their relative was the main reason caregivers aged under 65 years had not gained employment.
All of them reported experiencing personal health changes over the years.
Recipients of care ranged from 72 to 93 years, eight were males and two females.
Eight had a high level of dependency in self-care according to the Barthel scale:
four with 0 score, two with 2 and one 6. Seven had been bedbound for several years.
The other two relatives had a moderate level of dependency, scoring 12 and 16 respectively.
Only three of the family caregivers were certain that Alzheimer’s was the definitive
diagnosis of their relative. The remaining four could not explain what type of dementia
their relative had.
Main findings
Five key overarching themes that were not mutually exclusive were identified by observations,
interviews or both: (1) provision of care towards self-care dependence and prevention
of complications; (2) perceived needs; (3) unknown needs; (4) caregivers’ own physical and emotional
impairments; and (5) balancing limited time. Table 2 shows each theme and associated
sub-themes.
Provision of care towards self-care and prevention of complications
Through the observations and interviews the maintenance of self-care of the recipient
of care and the prevention of complications was the main and the most noticeable activity
provided by family caregivers.
Assistance in Activities of Daily Living
Family caregivers were more aware of their role in maintaining self-care than in preventing
complications. Data showed that almost all family caregivers assisted the person in
activities of daily living ranging from bathing (9/10), grooming (9/10), feeding (8/10),
toileting (9/10), medication management (10/10), socialisation (10/10), and help with
medical procedures (10/10). The following extracts illustrate this theme.
She knows how to wash the person, takes care of their skin and hair, and dressing
techniques. She is able to adjust the temperature of the water.
(Caregiver 1, Observation field note 3)
She also knows all the side effects of the medication and the indications and restrictions
related to taking these drugs. (Caregiver 5, Observation field note 1)
Transfers of the person to the wheelchair, sofa or bed (9/10) without any human or
mechanical assistance were most often observed. During interviews caregivers expressed
that they viewed asking another relative or healthcare provider for help as a weakness.
Furthermore, most ignored potential aids which might support them in this role.
“He is too busy [son]. And I don’t need help. I always did it by myself [transfer
to bed].” (Caregiver 2, Interview 1)
Promotion of independence in self-care was a sub-theme, identified in two family caregivers
through observations and interviews, although seven relatives could have benefited
from this care.
“And she helps too. [She wets the sponge and I put the soap on [FC]. I reinforce ‘Come
on. You do what you can [talking to the relative]’. [FC tries to maintain the physical
capacity of the person being cared for].” (Caregiver 3, Interview 1)
In interviews, when the reason for not stimulating their relative to continue being
independent in self-care was discussed, family caregivers gave several reasons: had
never thought about that, concerned that the other relatives or neighbours would think
that they were neglecting the relative, or it was quicker for family carers to do
it themselves than to wait for it to be done by the ill person.
“I went to give the lunch to my mum [She does not allow the mother to feed herself,
although she has the capacity to do so].” (Caregiver 7, Interview 1)
Prevention of complications
Family caregivers were focused on preventing complications including aspiration, dehydration,
constipation, pressure ulcers, moisture lesions and wandering. While the encouragement
of self-care was evident, interviews around knowledge concerning the prevention of
complications were very enlightening. For instance, the researcher needed to understand
that the head of the bed was placed at an angle of thirty degrees when the family
caregiver put the patient in bed.
“I position the bed so she doesn't choke ... you know, so the food goes better to
the tummy.” (Caregiver 5, Interview 1)
A final sub-theme addressed in the observation and interviews was the prevention of
falls. All family caregivers were aware of the importance of falls prevention. However,
not all had the physical capacity to prevent them. Some were old and had physical
impairments of their own. All participants with dementia presented cognitive impairment,
which increases the risk of fall. Through observations, only two family caregivers
were seen to follow routines and use communication management to avoid further confusion.
The only person able to walk (with support of a stick) caused an enormous amount of
trouble as she was always trying to escape the home.
“I spend all day watching her. If I miss a minute, she disappears. One day, I took
2 hours to find her. I do not understand how. She walked almost 2 kilometres with
her stick. And she is not able to help me do anything at home. […] I sometimes wish
that she was bedbound.” (Caregiver 9, Interview 1)
Through observations it was evident that once the person cared for became more dependent
on self- care the risk of complications increased. Family caregivers were not aware
of this complexity, as they continued to support the person in their self-care in
the same way they had done until that moment, without noticing the new needs.
Perceived needs
Perceived needs were grouped into two sub-themes: knowledge and skills. Both sub-themes
were approached in the interviews and informal conversations during the observations,
mainly because the researcher felt that these themes were avoided in front of the
dependent person. Interviews provided additional insight in relation to knowledge;
family caregivers reported the need for a better understanding of the process of dying
and disease progression; prevention of complications (pressure ulcers, aspiration
etc.); medication and behaviour management; and how to access professional support.
She knows that the urine becomes more concentrated with age. However, she does not
know how much fluid she should give to avoid dehydration. She asks me [researcher]
how much fluid she should give and what the signs and symptoms of dehydration are.
(Caregiver 6, Observation field note 2)
Simultaneously, family caregivers talked about the need of skill improvement such
as performing suction of oral secretions, how to apply different techniques to transfer
the person to wheelchair or toilet seat, and how to provide care to prevent ankyloses,
pressure ulcers and aspiration.
“Do you know that I need to do suction? […] It is not difficult to learn how to use
the suction. They explained to my sister first. After that, the nurse came and explained
it to me.” (Caregiver 7, Interview 1)
Unknown needs
To identify the unmet family caregivers’ needs, the researcher compared the level
of care needed by the person according to palliative care standards to the care provided
by the family caregiver. This sub-theme was mainly identified through observations
and clarified in interviews. During the study a set of complications that were not
prevented was observed. Aspiration, ankylose, dehydration, constipation, moisture
lesions, pressure ulcers and falls were not prevented in some instances. Through the
interviews was possible to clarify that these family members ignored these complications
or denied they were problematic.
PAD has high risk of aspiration and the top of bed was less than 30 degrees. However,
FC did not do anything. FC did not allow the community nurse to explain how to prevent
aspiration. This FC has been caring for more than 10 years and was very upset because
the nurse provided an explanation.
(Caregiver 2, Observation field note 1)
Two other sub-themes were identified through observations and interviews. One was
the lack of knowledge related to disease progression, warning signs and symptoms,
medicines and side effects, exercise and diet and empowerment of self-care of their
loved ones. Another sub-theme identified was how carers could access professional
support. Five caregivers expressed ignorance of how to obtain health professional
support (community nurse, doctors, social workers …), social support (day centres,
nursing homes …) and community support. One caregiver called Emergency Medical Services
when his wife was dying, because he did not know what was happening.
“I called to the INEM (ambulance service) that came and took her to the Emergency
Medical Services.” (Caregiver 5, Interview 2)
Caregivers’ own physical and emotional impairments
Observations and interviews highlighted other aspects directly related to the family
caregivers’ role and capacity to provide care. Some care was not provided due to caregivers’
own physical impairment. For example, support for self-care and prevention of complications
were not delivered when the family caregiver experienced physical impairments. Five
of the family caregivers had declining physical capacity were unable to provide physical
care. As a consequence, and because they had no access to community or palliative
care support, three of the people with advanced disease were entirely bedbound.
I asked FC about her tired face. She referred that she has had back pain from an old
fracture, and that it took a lot of effort to reposition PAD in bed.
(Caregiver 1, Observation field note 4)
Two family caregivers shared how their own emotional fragility and lack of relational
interaction with their relative interfered with the quality of care provided. Both
family caregivers had been followed up by a specialist in psychiatry. Their psychological
and emotional state not only interfered with their ability to care but also with their
own overall health.
I went to the psychologist. [...] I went to the psychologist and he told me to stop
all the medicine. I just stopped sleeping at night. [...] And then what he advised
me to do was to go to a psychiatrist ... First, I still go to the general practitioner
(GP) and then I go to the psychiatrist. (Caregiver 9, Interview 1)
Nevertheless, some of the family caregivers had their own self-care strategies, handcrafting
hiking, reading, swimming, going to the hairdresser and watching television. During
the observation period some family caregivers gave up their hobbies and free time
as the person cared for became more dependent on personal care.
“I stopped going to the movies, having dinner out. I stopped doing what everyone else
does. [...] anywhere I go, I am going to run [trembling voice]. I am experiencing
stress for fear of something happening to my mum.”
(Caregiver 7, Interview 1)
Balancing limited time
Observations and interviews highlighted lack of time as having a direct impact on
the type and quality of care provided. In addition to their caregivers’ roles, these
family members were responsible for preparing meals, housekeeping, managing the family
budget, raising animals, and cultivating crops for income. Family caregivers expressed
that these activities lead to less time to themselves and, consequently, less time
available to care for their relative. To compensate, they again reduced their leisure
activities. Furthermore, in the interviews, other activities were identified that
contribute further to the reduction of free time. All caregivers needed to take care
of another family member, a father, a husband, grandchildren or a brother. The reason
given for this extra care was because they were at home and ´had more free time’.
“In addition to taking care of her mother, she supports her daughter by helping to
take care of her grandchildren almost every day”
(Caregiver 7, Observation field note 2)
Figure 1 depicts the main findings, where it is evident that an imbalance in any one
of the factors would lead to reduced performance of family caregiver role, and increase
the risk of complications for their relatives. This could result in overall decrease
in their quality of life for both parties.