Support for families with a family member suffering a cognitive disorder

Authors


Dr Ryoko Rokkaku PhD, Department of Nursing, Ibaragi Christian University, 6-11-1 Omika-cho, Hitachi-shi, Ibaraki-ken 319-1295, Japan. Email: rokkaku@icc.ac.jp

Abstract

The management of the care giving of a family member with dementia is an important issues these days. In the present article, I discuss the stages families go through on their way to finding out that a family member has a cognitive disorder. Stage I is a stage of bewilderment in which negative care is given. In Stage II, the relatives find out or realize that the person has a cognitive disorder and they try to extricate themselves from the negative care. In Stage III, the family members express hope that the person will recover, whereas in Stage IV they resign themselves to the fact that their loved one has a cognitive disorder and will never recover. The last stage, Stage V, is when the family members try new types of care. The family vacillates between the different stages and, after a long period of time, they accept the fact that the person has a cognitive disorder and finally create an environment in which the patient can live peacefully. It is a long process, and perhaps a very hard one for the family. Each member of the family has his or her own history and role withing the family; this cannot be forgotten and it is very common for family members to be unable to accept the situation. Even still, the family persists. Because they persist, they sometimes become angry; they also lament and ignore the situation. It is important to thoroughly observe the stage at which the family comes to accept the situation and to be mindful of caring for the family.

INTRODUCTION

It is the desire of most elderly persons with a disease or disorder to stay at home and receive care from family members, who have the most love for the elderly person and provide significant emotional healing and support. Conversely, for the family members providing the caregiving, although the fact that they must care for their spouse or parent is definitely sad for them, the provision of care itself is an expression of love and makes them feel that they are fulfilling an important role. However, today's families are often unable to deal with the day-to-day requirements of the elderly people requiring care.

In the middle of these changes, families with a family member who has a cognitive disorder are sometimes faced with a situation where they cannot provide all the caregiving needed. In addition, it is quite natural that this causes a variety of problems within the family. When more skilled care is required, or when behavioral and/or psychological symptoms appear, the patient is usually institutionalized.1 One wife blamed herself for putting her mother-in-law in an institution every time she saw her. In contrast with this, one son has not visited his parent even once since the parent was institutionalized. Some families have even been quoted as saying ‘we never want to see his or her face again’. Even if they do not visit and do not want to see their face again, each family has its own history or issues that causes them to behave in this way. Furthermore, leaving a family member in the hands of another person is a big decision to make. The service we provide to family may be letting thembelieve, from a distance, that ‘Mom is doing well’ or ‘she is alive’. Therefore, we cannot really indiscriminately condemn all families by saying things such as ‘that family never visits their poor relative’. Even if the family's history and relationships until now are dragged out into the open, it is important that the caregivers understand the discord and get to know the family. Thus, supporting the family is connected to supporting the person with the cognitive impairment.

FIVE STAGES THROUGH WHICH A FAMILY PASSES TO ACCEPT THE FACT THAT THEIR PARENT OR RELATIVE HAS A COGNITIVE DISORDER

The clinical history of a patient with dementia will record symptoms including forgetfulness, and generally the family will bring a patient to a clinic for a diagnosis of dementia to be made. Diagnostic disclosure has serious impact and may cause anxiety, mental instability or crisis and may even be denied by the patient or by the patient's family.2,3 Therefore, a caregiver's adaptation to changes in the patient is most required.4 Over the course of a long process, the fact of the diagnosis is accepted and the relationship between the patient and his or her family becomes tight.

Below is an example of an elderly couple, in which the husband ruled the roost. The husband ‘K’ is 83 years old and his wife ‘Y’ is 80. K was enjoying a quiet and leisurely life after his retirement; he had lots of hobbies, made new friends, and told his wife to ‘do this and that’. He never did any housework or anything around the house.

Stage I

In summer 3 years ago, K had a mild stroke and his prostatic hypertrophy worsened; he started to go to the toilet every couple of minutes and his wife accompanied him each time. Around the same time, he forgot how to start up the computer and asked his wife to do it. He would get out of bed at about 4 a.m. saying, ‘I have to go to the toilet’ and dragged his wife with him. His wife did not realize it at the time, but later recognized that the symptoms of K's cognitive impairment may have started around this time. K's wife began being rather harsh with him, saying things like, ‘that’s enough already, we already went so many times', ‘I’m going crazy' and ‘you are so selfish and self-centered’. Then, Y to phone her oldest son who lived in a different prefecture and complained and grumbled to him. She did not fully understand the actions of her husband and just thoughtlessly denied things and felt disgusted. She started to wonder whether he really was this type of person.

Stage II

The frequency of Y's grumblings and complaints increased and their son became worried, so he took his father to see a doctor. On the basis of results of a battery of tests, K was diagnosed as having vascular dementia. K's wife Y was given an explanation about cognitive disorder and seemed to be quite shocked. Around that time, K's memory impairment was worsening and he was repeating the same thing over and over again numerous times. He would often call Y ‘Honey, Honey’. She grieved, ‘it’s a shame', ‘he used to think only of himself’ and ‘ever since he developed dementia, he acts so silly’. When her husband would call her too much, Y would answer him impatiently by saying ‘What?’, and often she simply ignored him. Y understood that K had a disease, but felt sad when she recalled that he had ruled the roost during their marriage.

Stage III

When K called out to Y ‘Honey, Honey’, she replied, ‘you are the head of the family, pull yourself together!’ The wife used to smile bitterly when her husband jokingly replied ‘Oh, that’s right, the head of the family should not behave like this'. Even still, Y always hoped that K would get better and used to get him to practice. Six months had passed since he was first diagnosed as having a cognitive disorder. As usual, Y urged K to do calligraphy on the back of newspaper advertisements and practice singing songs he used to like. Even though she knew and realized that K had a cognitive disorder, Y wanted him to return to normal, like he used to be, and therefore she encouraged and reminded him.

Stage IV

The symptoms of K's cognitive impairment steadily worsened and gradually he became unable to wait for anything. ‘Honey, Honey, I’m hungry' he would call out to his wife every couple of seconds. If she ignored him, he would roll off his futon mattress onto the floor and would yell ‘Help’. The situation was getting steadily worse. Y would say that K just rolled off his futon mattress on purpose and would then roll him back onot it again. She experienced mixed feelings of neglect and despair because she knew that K would never be his old self again.

It took about 1 year for Y to progress through Stages I to IV and, in fact, she went back and forth between Stages I and IV. She would often berate her husband, in a voice louder than him, ‘don’t speak so loudly, the neighbors next door can hear you!' Conversely, at around 9 p.m. she would say ‘Honey, let’s both go to bed'.

Stage V

Later on, Y would scream ‘you just ate!’ and then mumble to herself ‘oh, I know I should not talk to him like that’. Eventually, the couple reached Stage V. It is a big thing for a family to accept a person with cognitive impairment. Since coming to accept K's condition, I think the next year was splendid for both the wife and the husband. Y recalled that first year and said ‘I wanted to kill him and then myself’.

Six months later, K developed aspiration pneumonia, which left him bedridden and K eventually died of cardiac failure. While K was in hospital, his wife visited him every day and, while by his side, she would mend his clothes and his little pillow. Three days before he passed away, K said to his wife, ‘Honey, you are the best wife in the world’, which was a wonderful present for her to receive from him.

IMPORTANCE OF DEVELOPING STAGES

I have explained the stages involved in a family accepting a person with cognitive impairment; however, like in the case of Y, the process may not proceed in sequence from stage I to IV, but rather go up and down and back and forth. Eventually, the family creates an environment in which the patient can live peacefully at their side. The more memories a family has, the longer the road is and perhaps the more cruel it is for the family. During Stage III, the wife hoped her husband would play the role of ‘Head of the Family’. The husband had been the protector of the household up until that time. Then he developed a cognitive impairment and changed from the protector to the protected. How can family members be made to accept that? And what about the promise he had made to take his wife to a hot spring next year? Therefore, Y slipped out ‘Honey, pull yourself together’. Even still, the family persists. Because they persist, they sometimes become angry, they also lament and they also ignore the situation. It is important to thoroughly observe the stage at which the family accepts their situation and to be mindful of caring for the family.

CONCLUSION

Depending on the stage the family is at, health care workers should listen closely, provide information related to cognitive impairment, present care models and provide encouragement. Because the family is being supported too, it is possible to advance to the next stage. If you notice negative care by the family, you may want to give advice such as, ‘don’t you think you should be a little kinder?'; however, the family cannot accept or forgive the person with cognitive impairment who is losing his or her memory of the family and if you consider that the family has bitter experiences, it is necessary to encourage them by saying, ‘you are trying hard aren’t you?'. We should promote individual care for the family so that the family can advance through the different stages of acceptance. In addition, psycho-educational intervention for care-givers may be more required.5 If the family feels at ease, then most likely the person with cognitive impairment will also be able to live at ease.

Ancillary