The effect of the loss of memory on the relationship between caregivers and the demented patients

This theme focuses on the process of coming into terms with dementia. For most of the participants coming into terms with what the diagnosis meant, was paining. One of the participants said.

As soon as my mother was diagnosed with dementia I did not know what to do; I just cried…However, later on we got information from the Alzheimer’s society and I really appreciate their help up to this day. After the diagnosis, feelings of uncertainty clouded my mind. Even time I visited my mother in the hospital I wept throughout the entire night. Negative emotions of anger and bitterness overcame me and I remember very well- virtually all my friends deserted me. Their actions just complicated the situation- I started drinking uncontrollably. None of my family members ever gave me comfort. I later realized that things were getting out of control and that is when I approached a counsellor for help. The counselling sessions gave me hope and I was able to reconcile my conflicts and come into terms with the bitter truth.

One woman talked about how as the condition progressed, her mother depended on her entirely. She was the only one in her family and her mother was widowed. Because of her mother’s loss of memory she had to babysit her the whole day. As a result, she lost hope for the future. At times, she wished her mother would die so she could go on with her life. Her aunts and uncles kept away and she felt dejected and lonely. The more other relatives isolated her, the more she hated her mother. Just like her, at first, the other caregivers felt remorseful about the entire situation. However, as the care recipients lost their cognitive ability and became more dependent on them, they developed feelings of hatred and regret.

The perceptions of the caregivers about the patients’ loss of memory

Demented patients develop severe cognitive decline as the condition progresses. Most of the participants indicated that their care recipients were either in middle stage or the late stage. This means that their care recipients had major memory deficiencies and needed some assistance to complete their daily activities. Loosing cognitive ability can break families apart as one of the patients narrated.

As soon as I realized that my father was doing embarrassing things in front of my brothers and sisters I thought I was joking. In my mind one thing was certain; this was not the father that I knew. I was depressed and I developed feelings of self-denial. My brothers and sisters too kept to themselves; no one spoke to each other. My father’s illness had a huge toll on our finances. For instance, my little sister dropped out of school and all the way she became pregnant. After that, everything fell apart and that is when I realized that I had to take charge in order to salvage the situation. Unfortunately, my mother was too depressed and I was all alone. However, somehow I managed to convince everyone in the family to take an active role in finding the solution.

As the condition progressed, my father lost his cognitive ability to a point where he could not even remember our names. His speaking ability also declined and he became compulsive. When the situation got worse, everyone left, and I was left alone. It is then that I decided to seek long-term treatment for my father. I thought maybe if he was hospitalized in a long-term institution my brothers and sisters would return back. Unfortunately it never happened.

The participation of other relatives in the provision of care to the demented patients

It is well acknowledged that if one of the family members loses his or her cognitive abilities, the other members are likely to feel confused. As one member narrated:

After my sister became demented we became accommodative. Later on she lost her social inhibition, and we didn’t mind that much, we gladly helped. However, 7 years down the line, our sister became increasingly forgetful. One year later, she developed incontinence and as a result all the family members abdicated their earlier assigned roles. Only I (weeps) and my mother were concerned about my sister. In order to give her full attention I had to quit my job.

These feelings were shared by the rest of the participants except two of them who indicated that the other family members took an active role in caring after their loved ones.

The relationship between the caregiver and other relatives

Family caregivers are critical to the quality of life of the care recipients. While caregivers are necessary in the provision of the much needed care, the situation can be frustrating. At such times, care givers need help and support from other family members and community agencies. The help of the other family members is required not only to give care to the demented patient, but also in safe-proofing the home. As three four of the participants indicated:

Everyone in my family was assigned a particular role. We felt more fulfilled and we were happy that we could contribute our energies to ensure everything was running as normal

In contrast, the rest of the six participants reported there were conflicts in the family, as the patient’s demands became more intense. Feelings of hatred also arose between members who wanted to help and those who did not.

Discussion

The effects of dementia on family relationships are congruent with the findings of other studies that have been conducted. Memory loss in demented patients leads to increased forgetfulness during the middle stage. As a result of the mild cognitive decline, patients lose the ability to concentrate, and work. As patients lose their ability to perform complex tasks, the help of the other family members becomes necessary. As the condition progresses, patients demand extensive assistance. At the late stages of the illness, patients may develop personality changes such as delusions, anxiety, agitation, social inhibitions, and compulsions. All the changes signify a decline in the cognitive function.

Caregivers’ relationship before the patient was diagnosed with dementia

As expected, family dynamics are usually normal before a family member is diagnosed with dementia. Our findings indicate that family members enjoy happy times together and the possibility that one of them could be diagnosed with dementia remains impossible. At the time, some of the outcomes such as accusation of neglect, sequestration of persons with dementia and lack of communication do not exist.

The effect of the loss of memory on the relationship between caregivers and the demented patients

At this stage, the theme of coming into terms with dementia comes into light. Given that the loss of cognitive function renders the demented patient dependent on the caregivers could create strain and lead to depression. The caregivers take up primary roles and without the help of the other family members; they are likely to develop ill feelings towards the patient. In addition, the warm relationship that existed between the caregiver and the patient becomes threatened. The caregivers may also develop feelings of resentment as the patients impede their progress and the possibility of achieving their aspirations in life. This finding indicates that ill feelings towards the patient may be avoided if the caregiver receives the necessary support from outside sources.

The perceptions of the caregivers about the patients’ loss of memory

Caregivers receive the news of dementia with disbelief. As the condition progresses, the reality comes to light. With proper interventions, the caregiver and other family members can adjust accordingly as the cognitive ability of the patient declines. This finding can be linked to the idea of coping strategies. Caregivers may develop emotion-focused strategies such as wishful thinking, avoidance and emotional adjustment. Their perceptions could become even more negative if some of the members refuse to take up their assigned roles.

The participation of other relatives in the provision of care to the demented patients

The finding of this study supports the idea that family roles begin to change as the patient loses his or her memory abilities. This usually occurs when demented patients are past the mild stage. The degradation of family relationships can be traced to the activities such as the provision of direct and direct care the patient, symptom monitoring, situation management and emotional support. As suggested by some of the participants, family relationships can be strengthened if these activities are shared equitably.

The relationship between the caregiver and other relatives

As expected, family conflict is likely to occur as dementia symptoms become more severe. Dementia may be a great family divider as some of the members oppose the idea of taking care of the demented patient. The interpersonal conflict may lead to the eventual break up of families. At the same time the findings of this study indicate that family conflict may be prevented if each member actively participates in the provision of care to the affected patient.

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