With a tremendous rise in the geriatric population, in recent years, there has been a dramatic increase in the rates of dementia. Although many studies have been done on the individuals who were diagnosed with dementia, little research has been done on the burden that the caregivers carry from day to day. This burden can have a tremendous impact on individuals physically, emotionally, spiritually, and intimately. Interviews were conducted with thirteen different individuals in south-central Virginia. Although most of the results showed negative outcomes of the role as caregiver, there were many positive aspects, as well, some of which were spiritual enlightenments and closer bonds between the dementia patient and caregiver. Role reversal was seen more in the relationships between parent and child than any other.
Key Words: Dementia caregiver, burden, spiritually, physically, emotionally, intimately
In the past few years, the geriatric population in the United States has increased dramatically (Frey 2010). Since the prevalence of dementia increases with age, there is expected to be a rise in the rates of dementia due to the increase in the geriatric population (Plassman et al. 2007). Dementia is the “progressive deterioration of intellectual capacity associated with the widespread loss of nerve cells and the shrinkage of brain tissue” (Holmes 2012:628). By the year 2050, approximately 13.2 million Americans are expected to have been diagnosed with dementia (Herbert et al. 2003). There are many different types of dementia, but the most common are Alzheimer’s disease, vascular and frontotemporal dementia, hippocampal sclerosis, and dementia with lewy bodies (Barker et al. 2002). Dementia is not only a burden on the individual who has been diagnosed, but also on the loved ones and caregivers.
In the proposed study, I will explore how the caregivers and loved ones of an individual with dementia are affected by this disease. The units of analysis are the individuals who are affected by the caregiver burden. How are their personal lives impacted by the caregiving? Are female caregivers affected any differently than male caregivers? Do other social characteristics of caregivers, such as race, social class, and age, affect their experience as caregivers?
For years, the studies of Alzheimer’s disease focused primarily on the individual who had been diagnosed with the disease. In more recent years, not only has the patient been studied, but the caregivers and loved ones, as well. The entire family has been shown to have been affected by the disease (Ducharme and Geldmacher 2011). Having to care for a loved one with dementia can take a toll on an individual. Family caregivers are often referred to as “the invisible second patients” (Brodaty and Donkin 2009:217). Caregivers experience a variety of physical and emotional problems. Dementia caregivers are more prone to have “cardiovascular problems, lower immunity, poorer immune response to vaccine, slower wound healing, higher levels of chronic conditions (such as diabetes, arthritis, ulcers, and anemia)” as well as many other problems (Brodaty and Donkin 2009:219). Behavioral problems seem to be one of the greatest burdens on caregivers (Etters, Goodall, and Harrison 2008). In one type of dementia, Frontotemporal Dementia, patients show a decline in behavior and language skills which makes it hard on the family to communicate with their loved one(Cardarelli, Kertesz, and Knebl 2010). This leads to a loss of meaningful conversation and emotional closeness, both of which are so often taken for granted. The caregivers often face “ambiguous loss” in which they are no longer able to share their meaningful memories of the past with their loved one because the one that they love, so dearly, is not able to remember (Foizie 2012). This is important inasmuch as memory is the historical thread that lends our lives meaning and reflects the grounding of self in a particular context. In a four-year study, caregivers were shown to have a 63% higher mortality risk than non-caregivers (Shim, Baroso and Davis 2011). There was a decrease in employment rates, and the rates of poverty were increased in women (Shim et al. 2011). Caring for an individual with dementia has been quoted as being “more stressful than caring for a person with a physical disability” (Brodaty and Donkin 2009:218).
Oftentimes, the admission into a facility, for care, adds more stress onto the loved ones (Brodaty and Donkin 2009). This admission is, usually, a sign of dementia progression (Guagler, Mittelman, Hepburn, and Newcomer 2010). Many are institutionalized for reasons such as combative behavior and repetitive verbal and behavioral issues (Gaugler et al. 2011).However, the caregiving does not end there. These increased burdens make it harder on the caregivers, after nursing home admission (Guagler et al. 2010). Even after admission, many female caregivers remain heavily engaged in the direct care (Guagler et al. 2010).
The stress on the caregiver, in some instances, leads to abuse and mistreatment (Campbell 2009; Shim et al. 2011). A few factors that are associated with these negative outcomes are the caregiver’s culture, bitterness, and exhaustion (Shim et al. 2011). The relationship that the two had before the diagnosis affects the outcome for the patient and caregiver (Winter, Gitlin and Dennis 2011). Higher quality care and lower risk for abuse have been associated with the stronger relationships of the individuals prior to diagnosis (Winter et al. 2011).
The attitude of the caregiver impacts the care that is given as well as the interactions between that individual and the care recipient. Self-indulged caregivers, those who put their own needs before the ones of the individual whom they are caring for, showed greater resentment of their role and were more prone to psychological distress (Brodaty and Donkin 2009). Those who were motivated out of love had more positive outcomes, some of which were increased faith, bonding, and spiritual growth of both the caregiver and recipient (Brodaty and Donkin 2009). Caregivers who respond negatively, with anger and criticism, had more of a burden and were more likely to treat their partner in more hurtful ways (Campbell 2009).
Many positive aspects are associated with the role of caregiver. “Uplifts are events of short duration that evoke pleasure, affirmation, or joy in the caregiver” (Shim et al. 2011:222). The theory of existentialism provides an approach on how to view caregiving in a positive manner (Shim et al. 2011). This theory refers to using an approach that gives meaning to life. Those who approached the caregiving positively and found fulfillment through appreciation and respect of his or her existence were shown to have had better health (Shim et al. 2011). Those who cared for the patient through love were inspired more than those who simply cared for the patient due to responsibility (Shim et al. 2011). Shim et al. (2011) looked at three different groups of caregivers—the negative group, the ambivalent group, and the positive group. Those of the negative group reported nothing positive; the ambivalent group had little good to say about their role as caregiver; and the positive group had more positive than negative to say about their position as caregiver (Shim et al. 2011). The attitude of the caregivers has been shown to have a tremendous effect on the relationship and health of both themselves and the individual that they are caring for (Shim et al. 2011; Winter et al. 2011).
Studies have shown that the gender of a caregiver has a big influence on the care that is given as well as the health of the individual who is giving the care. In the United States, the vast majority of caregivers are female relatives of some kind (Brodaty and Donkin 2009). In one particular study, caregiver depressive symptoms were measured with the “15-item Geriatric Depression Scale (GDS),” and caregiver burden was measured with a “7-item short form of the Zarit Burden Interview (ZBI)” (Guagler et al. 2010:2). Female caregivers, especially wives, were shown to experience a tenacious burden following admission into a care facility (Guagler et al. 2010). Husbands were more inclined to face post-placement depression than wives (Guagler et al. 2010). Quantitative reports have shown that the burden of caregiving for a male is less significant than that of a female (Knutsen and Raholm 2009). The grief that is experienced often imposes an incentive for a transition from “self-centeredness” more towards a “broader personal identity” (Knutsen and Raholm 2009:50). Each man who was studied spoke of his grief in terms of what life he had left, “expectations that were never fulfilled” (Knutsen and Raholm 2009:52), and loss of their best friend. Each of these men desired to talk with other men in the same predicament (Knutsen and Raholm 2009). They also voiced how they were not comfortable talking with the nurses, most of whom were young women, about things such as sexuality and hygiene (Knutsen and Raholm 2009). However, there were some positive aspects shown throughout the study. For example, husbands’ self-confidence improved through their care for their wives (Knutsen and Raholm 2009). The desire to institutionalize (DTI) was tied to the poor quality of the relationship (QoR) for male caregivers but not for the female caregivers (Winter et al. 2011). One study showed a greater risk of stroke within one year of caregiving for men (Winter et al. 2011). Men who had poor relationships with the women that were diagnosed, beforehand, also had higher levels of depression (Winter et al. 2011).
A great deal of the stress that these individuals face is limited help and support received from others, decline in physical health of their relative, and less interaction with the relative after institutionalization (Guagler et al. 2010). Many grieved the chances that they missed of having made amends to past issues (Ott, Kelber and Blaylock 2010). The caregivers who were depressed were more likely to be harmful towards the one they were caring for (Williamson and Schaffer 2001).
Frequently, the caregiver is the husband or wife of the individual who is being cared for. Spouses have been shown to have a greater burden (Harris et al. 2011). Oftentimes, the role reversals are very disturbing (Harris et al. 2011). The spouses of individuals with dementia are more likely to report this burden after nursing home admission than other caregivers (Shim et al. 2011). The quality of the relationship, prior to diagnosis, has a great impact on the care that is given. Those who had a poor relationship with their loved one, before diagnosis, were more likely to suffer from “depression, lower quality of life, and less satisfaction in caregiving” (Harris, Adams, Zubatsky and White 2011:951). Harris et al. found that the way that the caregiver viewed his or her spouse changed after diagnosis. Most of the caregivers stated that they saw themselves as “spouse” or “spouse-caregiver” (Harris et al. 2011:951). Those who saw their relationship as highly intimate were not as likely to talk negatively or be intimidating to their partner (Harris et al. 2011). The intimacy and sexuality of couples was affected in approximately 80% of the couples that were identified (Harris et al. 2011). Many patients, after being diagnosed, show inappropriate sexual behavior. Since many caregivers feel more like a “parental figure,” they are uncomfortable with their partner, sexually, yet they still have that desire to remain intimate with their spouse because it helps them to cope during this difficult time (Harris et al. 2011:952). Often, this intimacy helps to improve the negative consequences of being the one to give care (Harris et al. 2011). The spouse- caregiver has been shown to suffer more depression than the spouses who do not provide the care for their loved one (Campbell 2009). Ott et al. (2010) identified other issues related to caregiving for a spouse, including aggression, both verbally and physically; issues of trust; sleeping problems; poor nutrition; dysphagia; incontinence; and skin problems.
Oftentimes, minority groups use different approaches than that of other groups of individuals (Brodaty and Donkin 2009). The desire to institutionalize is greater for Caucasian caregivers than for other races and ethnicities (Winter, Gitlin, and Dennis 2011). Homosexual caregivers face more isolation and lack support (Brodaty and Donkin 2009). Ethnic minorities such as Native Americans have limited access to services because they do not understand dementia as well, and they have trouble with communication (Brodaty and Donkin 2009).
With the current massive population of middle-aged Americans and seniors, the geriatric population is expected to see a tremendous growth within the next twenty years (Frey 2010). A large portion of this population is a result of the baby boom which occurred between 1946 and 1964 (Frey 2010). Since there was such a great drop in the birth rate following this generation, these individuals will not have many to depend upon (Frey 2010). The longevity of individuals has increased since the time of the early 1900s as well (Cutler 2012). In the early 1900s, people were expected to live approximately 48 years, whereas in the year 2000, the life expectancy had been increased to 87 years (Cutler 2012). Due to the research that I have presented on the loved ones of dementia patients, I feel like this study would be an endeavor worth carrying out. Not only could it be of benefit to the loved ones but to those who are stricken with the illness, as well. I have seen relatively few studies where the researchers have conducted one-on-one interviews with the loved ones of patients to gather in-depth information on how they, as caregivers, are affected by their loved one’s diagnosis with dementia. Not only would this information be useful on how to improve the lives of the caregivers but on how to improve the patient- caregiver relationships, as well.
The Theory of Attachment
Bowbly described attachment theory as “a way of conceptualizing the propensity of human beings to make strong affectional bonds to particular others and of explaining the many forms of emotional distress and personality disturbance, including anxiety, anger, depression, and emotional detachment, to which unwilling separation and loss give rise” (Bowlby, 1979, p. 127). The role of caregiver can lead to many emotional disturbances and strong attachments which make it harder to separate from the individual that is being cared for (Brown and Schlosberg 2006). Many caregivers who are loved ones of the individual being cared for have known the individual for a good while. These attachments grow stronger at times of illness and as individuals get older. Therefore, I hypothesize that as individuals are diagnosed with dementia and as the dementia progresses, caregivers form strong attachments that make the burden grow heavier.
The Social Exchange Theory
As individuals grow to know each other, they form a bond and dependence upon one another (Call et al. 2013). Both partners have expectations of one another. For example, oftentimes, the male head of the household does more of the maintenance work, and the female carries out tasks such as cleaning and cooking. If the family of a household is built up around a structure such as this, it would be hard for one individual to take on the tasks of another with the sudden onset of dementia. From this, I hypothesize that as caregiver, these expectations can lead to a greater burden upon the caregiver.
The Adaptation Theory
As time progresses, caregivers generally become more accustomed to the role that they play (Brodaty and Donkin 2009). Adjustments are made in their lives in order to cope with their role as caregiver. Many have to make changes in their finances, leisure time, and place of residence as well as many other modifications. From this, I hypothesize that caregivers have to make adaptions in order to carry out their role as caregiver.
The “Wear and Tear” Theory
The stress that individuals endure as caregivers plays a toll on their lives (Brodaty and Donkin 2009). Thus, they may have declines in their health status, both mentally and physically. Dementia caregivers are prone to have “cardiovascular problems, lower immunity, poorer immune response to vaccine, slower wound healing, higher levels of chronic conditions (such as diabetes, arthritis, ulcers, and anemia)” as well as many other problems (Brodaty and Donkin 2009:219). From this, I hypothesize that as time progresses, the role one plays as caregiver can have a negative impact on them, mentally and physically.
The Role Ambiguity Theory
Oftentimes, caregivers are very unclear of the role that they play (Foizie 2012). With the sudden onset of dementia, many are unprepared for what they will face and have to deal with in their role as caregiver. Although they have taken care of themselves, all of their lives, some caregivers may not understand how to take care of an older adult whose care is more specific. For example, many have heart conditions, diabetes, incontinence, osteoporosis, thin skin, slower reaction time, and a weakening of the immune system. All of these conditions require more precise care, and it is important that the caregiver understands this. Many have never dealt with all of the paperwork, including insurance forms, Medicare and Medicaid paperwork, and other government- run programs. Therefore, I hypothesize that the uncertainty of the role that individuals play as caregiver can add more stress to their role as caregiver.
The “Anticipatory Socialization” Theory
When people are aware of what to expect as their role as caregiver, they are more prepared to deal with what is coming up (Foizie 2012). When caregivers anticipate what to expect, they are more equipped to handle their role. Some may have had connections with other individuals who have been had the role as caregiver and are more prepared for what is to come. Others may have had professions such as doctor, therapist, or others in which they have had dealings with dementia patients. Persons such as these are more aware of what to expect. Therefore, I can hypothesize that when an individual is well-informed of what it to be expected as the disease progresses, they are more prepared for the role that they will play as caregiver.
The Role Captivity Theory
Many caregivers are physically and mentally able to perform their job as caregiver, yet they have very little desire to do so (Foizie 2012). There is a broad range of reasons why people may not want to care for their loved ones. Some may have not had a good relationship in previous years. There could be issues of childhood abuse and neglect, or they simply may not have been very close to one another. Others may worry about their financial stability. Doctors’ visits, medications, and much of the medical equipment required by many cost a tremendous amount. Some may have to pay for their loved one’s food, clothing, and shelter, also. Some may not want the role as caregiver simply because they do not want to see their loved one in this condition. When an individual has no drive to carry out a task that has been given to them, they are not as likely to give as high of a quality of care. From this, I hypothesize that the greater the desire is to be the caregiver, the less stress there is on the caregiver and the greater the quality of care that is given.
The Sequestration Theory
Over time, the stress that is endured is likely to build up (Brodaty and Donkin 2009). As the dementia progresses, the individuals have more problems and are more prone to face more difficulties physically, mentally, emotionally, and intimately. Eventually, the caregivers may come to a point in which the role as caregiver becomes more than they can bear, and they end up having to admit their loved one into a facility. From this, I hypothesize that the greater the stress is on the caregiver, the more likely he or she is to admit their loved one into a facility.
There are various facilities where I have worked in which I have become well acquainted with family members of particular residents. I plan to draw samples from each of these agencies to conduct my study. The facilities that I am speaking of are Gretna Health and Rehabilitation Center, in Gretna, Virginia and the Medical Care Center and Heritage Green Assisted Living Facility, both of which are located in Lynchburg, Virginia. The relationships that I have gained with individuals who have dealt with dementia will help me to go more in-depth about the impact that the diagnosis has made on their lives—socially, emotionally, financially, and intimately. This study will also show how the patients’ and caregivers’ race and gender plays a significant role in the care of the loved one as well as the well-being of the caregiver.
Most individuals who were interviewed were immediate family members of the individual whom they cared for, ranging from children, spouses, to cousins. Two were certified nursing assistants who cared for the individuals. The time in which they had been caring for the individuals varied, as well, most of which were from one to twelve years. The greatest amount of time that a participant had been caring for an individual was seventeen years. One individual never knew that his mother had dementia until asked by the Administrator of the nursing home if he would be willing to participate in my study.
The purposive sampling technique will be used, with the existing contacts that I have to locate respondents for in-depth interviews. This technique is used when one has knowledge that was gained prior to the study, to select a group of individuals that will represent the population of interest (Berg and Lune 2012). I plan to choose the individuals who appear to feel more comfortable talking to me. Two to three loved ones of the various residents at each facility will be interviewed. Each interview will last approximately one hour. One benefit of this type of sampling is that I have become rather well- acquainted with many of the family members at these facilities, so I feel like they will be very comfortable talking to me about changes in family dynamics that have taken place, since diagnosis. Due to past conversations, many of these individuals know that I consider it a privilege to have the opportunity to work with their loved ones, and for this reason, I feel like they will know that I am doing it for the benefit of their loved one as well as themselves. This is why I feel like this would be a good choice of access. One advantage of in-depth interviewing is that I will be able to gather deep, rich data about how their loved one’s diagnosis of dementia has affected their lives. After having interviewed the various individuals, I plan to use snowball sampling by asking them if they know of anyone else who has a loved one with dementia that would feel comfortable having me interview them. I plan to interview the residents’ loved ones inside of the facility. While there are many advantages to this type of sampling, there are still a few disadvantages, as well. Since in-depth interviews are time consuming, it is not possible to obtain statistically representative samples (Berg and Lune 2012). Since I am doing the study alone, it will not cover as vast of a range of individuals as it could have if the study was being done by a greater number of people.
The interviews that I plan to do will be semi-structured. In this type of interview a list of questions is made, beforehand, from which other questions may stem. The topics that I plan to cover are: 1) Caregiver Burden, 2) Effects on Marriage, 3) Gender Differences, 4) Financial Burden, and 5) Benefits of Caregiving. I plan to record the interviews, but if the person prefers that I do not, I will take notes by hand. After each interview is complete, I will transcribe the notes, creating separate files for each interview. I plan to record the data that has been gathered on the Atlas.ti program, in order to keep it well organized. The interview guide is located in Appendix A.
Positive Changes in Relationship
Several stated that they felt that their life had more meaning. One individual felt as though her position as caregiver had made her a stronger person. One lady whom had been diagnosed with “a tumor the size of a golf ball” on her brain in recent years commented that she felt like her life was spared so that she could be there for her husband to support and comfort him. Several stated that they were happy to be able to keep the person at home. One son who was the caregiver for his father said that he was happy to be able to keep his father at home since that was where he had spent his entire life. One man cared for his father who had paranoid schizophrenia as well as dementia. He stated that his father had come to realize that he needs help. Due to this, his father is now more “grateful and thankful.”
Negative Changes in Relationship
Although most individuals being cared for were still able to recognize their loved ones, there were a few that were not able to do so. One participant told of how she was unsure of whether or not he was able to recognize her because he no longer called her by name. Several said that they knew that there would come a day in which their loved one would not be able to recognize them anymore, yet they dreaded the arrival of that day. Many negative changes had been seen such as an inability to communicate. Several stated that they were sure that the individual knew what they wanted to say, but they were unable to put it into words. One lady who has to drive about 45 minutes to see her mother told of how some days, after she arrives, her mother does not even want to see her, and she has to drive all of the way back home. Many stated that the commitment, twenty-four hours per day, seven days per week, takes all of their time. “You basically lose your life.” Another man said that he felt like he should be spending more time with his wife. A couple of individuals commented that they never felt as if their work was done. “You always walk away feeling like you haven’t done enough. No matter how much you do, you feel like it’s something else you could’ve done.” One lady told of how her husband had been abusive and had to be put in a facility for the safety of her as well as others. When their daughter visited with him, one day, she asked him about his daughter (referring to herself), and he told her that he had not seen her in a while. This was very hard on both his daughter and his wife. When at home, one day, he threatened his daughter who had been “the love of his life.” Another lady who was disabled, herself, and close to the age of the individual that she visited frequently told me how sad it made her because she could see herself in that position in years to come.
Various difficulties were stated by the individuals that were interviewed. Many told of how their loved ones who had dementia would not talk or eat well and how they had trouble getting them up and dressed. Obviously, the caregivers have to have a lot of patience to deal with their loved ones in this state of mind. The patients’ attitudes were a great deal of trouble for many. “She can be stubborn. She has a will of her own. She wants to get up and go—it’s been her nature all of her life.” Another said, “The day goes fine, but you can put your clock on 4:30 or 5:00, and there’s a definite change. It can go to anger, or it can go to tears.” “Some days the attitude and demeanor changes from day to day, hour to hour, minute to minute. So, it’s like you don’t know what to expect until you get there.” One lady stated that, at one time, her mother had been limping for a couple of weeks, so she and her family carried her to the emergency room. After sitting in the waiting room for seven hours, her mother was taken back into the emergency room by the doctors to find that her hip had been broken for two weeks. She told how weeks before, she had moved a television into another room for her mother. The television had been in a room, unplugged, for a good while. Her mother complained, saying that she watched that television every night. She offered to move it back into the room for her, but her mother told her not to do so. The next day, when she got home she saw that the television was back downstairs and asked her mother who had moved it for her. Her mother said that she moved it on her own. This was how she had broken her hip. Later in the interview, she said, “And it’s just really sad. She’ll cry and moan, and she’ll say ‘I miss your daddy so much.’ And it just breaks my heart, you know, and I just pray all the time that God will comfort her and that I’ll make the right decisions.” Another caregiver stated that his father seemed obsessed with the telephone. “He did go through a period where he would call me five, six, seven times in a row, and it might be 2:00 in the morning when he called me the last time. And he would forget that he’d called me, and he’d get upset about it.”
Family disputes over caregiving were an issue for many. Many of the disputes were over whether or not to admit the individual into a facility. A nurse caregiver told of how family members had gotten angry with her because the patient recognized and remembered her better than any of the family members. She stated how the patient recognized her voice and touch better than that of the family because she cared for the individual, daily. One individual whose brothers and sisters disagreed with him about admitting his father said that they agreed with him after they saw that their father was getting the care that he needed. A lot of blame was placed on one individual who was the primary caregiver for her mother. Eventually, she got to the point in which she no longer has anything to do with her siblings due to the controversy. “I quit and said I’m not having any more meetings. It seems like when you sit down with your siblings that something else comes out; something that was buried comes out all of a sudden.” One lady stated that she did not like how it made her angry with her brother and sister, sometimes, because she feels like they should be putting forth more effort to care for their mother.
Very few medical problems were addressed as having taken place since the role as caregiver had come into play. The son of one individual stated that he had been diagnosed with diabetes since the onset of his mother’s dementia, although he did not know if it was associated with his role as caregiver. The lady who was mentioned, earlier, who had a brain tumor told of how something showed up in a recent MRI. Further studies are being done, at this time.
The gender of the caregiver stood out to some people. One lady who cared for her cousin was referring to the patient’s son when she said, “I feel like she needs me here, and I want to be here. It’s just so sad when there’s no daughter, granddaughter, or sister involved for a woman patient. Guys… they do well, but it’s just different. Like, he (referring to his son) wouldn’t dare come in here and take her hose off. He’s told me that. He’s close to sixty, and that’s how he grew up… little different then, than now.” One man, in particular, stated that he did not want to admit that his spouse’s dementia had affected him emotionally.
Social isolation had taken a toll on many of the individuals. One wife said, “I’ve never been away from him. Got married April 3, 1954. We were married three days, and they sent him overseas. He was in the air-force, and they sent him overseas. And he had to go to North Africa. He was only supposed to be gone thirty days, and he was gone for three months. And other than that, we’ve never been separated. I miss him so much—I don’t like being alone by myself.”
Most individuals said that their motivation was to see that their loved ones were well taken care of. Many caregivers that were children of the patient felt like their parents had taken care of them all of their lives, and they deserved to be well-cared for. One stated, “Well, it’s kinda like payback. She did so much for me in younger, earlier years, and so much for my children that this gives me a chance to do for her, and I guess that’s the best way to look at it.” “It’s my responsibility; he’s my father. I’ve got to take care of him.” Some were motivated, spiritually. One said, “Just having compassion for people and knowing one day, if the Lord’s will, I will be older and that someone will have love and compassion for me and do what’s right for me.” The individual who had seen her mother abused throughout her life wept as she said, “Because of the past, the future has got to be better than the beginning.” Another said that she walked away with a sense of pride knowing that she had helped someone.
The role as caregiver has been a tremendous financial burden on most of the individuals whom I interviewed. One lady who was the primary caregiver for her mother told of how she had to sell her house, stating, “It was too much for me to take care of that and come over here all the time.” Another lady talked about how her husband wasted $50,000 in a week’s time, buying two trucks as well as a motorcycle that he was not even able to drive. When she called the business that had sold him the motorcycle, they told her, “Oh, he’ll be fine. He just fell off of it one time.” Two individuals told of how they knew that, eventually, they would lose everything that they owned.
Only two individuals who were interviewed were not worried about their money. One stated that Medicare and their drug plans would cover everything. Another lady who was the primary caregiver of her mother said, “I’ve just always been the type of person that I make it work. Whatever I have is what I do. I tell her as long as I’ve got money, she’s got money; as long as she’s got money, I’ve got money.”
Role reversal played a big part in my study, especially for those who cared for their parents. “It’s like a change in roles. I’m the son; he’s the father. He’s always been the one that’s the leader. Well, now it’s not that way anymore. I have to look after him. I have to lead him. It’s more like a reversal in the roles.” Another son said, “Actually I’ve drawn closer to him because I find myself caring for him and looking after him. Draws you closer. Before, never had them connections. Parents always looked after you. Now, tables have turned.”
Changes in Marital Relationships and Intimacy
Since I did not speak with very many spousal caregivers, I was not able to gather much information on how intimate the relationships were affected. Two ladies stated that their relationships had grown stronger since the onset of dementia, although they meant it in two different ways. One implied that her relationship with her husband had not been very strong, years earlier, yet he is very loving towards her now. She told how he gets very jealous when she talks to other individuals in the facility. Another individual emphasized, various times, how deep their love was for one another. One man commented, “She wouldn’t really know what to do, although she would enjoy it.”
A cousin who was a frequent visitor of her cousin said, “It makes m grateful that I am able to do what little I can for her; it’s not easy to watch someone you think you’ve always known and loved fade.” Another said, “Everything has a purpose… me, personally, I understand why I’m here.” Two individuals had a greater appreciation and more respect for other caregivers. “You used to judge people and say these people should be taking better care of their parents, but you don’t know what they’ve been through. And you don’t know ‘til you’ve been there yourself.” Another said, “I’m gonna tell you the truth—you don’t really understand what this disease does to people ‘til you’re in it and see what it does. It takes people that were confident, positive, on top of things and turns them into people that are not sure, don’t know. They lose the process of being able to critically think. I mean, it’s just a terrible disease.”
Many seemed to have come to accept things as they were and know what to expect in the future. The son of one patient talked about how he has times in which he gets angry but stated, “I just let him talk and just keep a neutral perspective on things. I think, spending as much time as I have with daddy… I think it’s made us closer.”
Surprisingly, several stated that their lives had not been impacted spiritually. One daughter got upset, saying that she prays, asking God to give her patience. Another man said that he stayed upset for weeks when he had to admit his mother into the nursing home, stating that he would go into a room, alone, to lie down, weep, and pray. Another lady told of how her mother believes in the Lord but has begun to “pray for people to be dead.” The daughter of one lady stated how the Bible says to honor your mother and father. One man said that he lost his mother, in 1992, to breast cancer and that she told him, from heaven, to take care of his father. One lady who was very optimistic in all that was said stated, “This past year has been one of the most spiritual years of my 78 years being on this earth. I’ve learned to respect and appreciate life. Life is a gift, and every day that I come here is a gift.”
This study indicates that the role as caregiver can play a tremendous toll an individual, not only physically but emotionally, spiritually, and intimately as well. The results have been deductively examined, and most all relate to the theoretical framework, showing how greatly the caregivers are impacted by the illness of their loved ones. It was shown that many had to adapt to their role as caregiver. This, in turn, supports the adaptation theory. One individual had to sell her house to be able to care for her mother, and many faced difficulties with employment. Oftentimes, it is impossible to hold a job while having an individual who needs twenty-four hour care.
Many cases of depression and various other health problems such as diabetes, arthritis and cancer were seen in the caregiver with a loved one’s onset of dementia. Marital relations were affected, as well, because, in many cases, time which would have been taken with one’s spouse was spent caring for their loved one who had dementia. All of these findings support the wear and tear theory.
Sequestration was seen in several cases. Individuals stated how difficult it was caring for the individual, at home, after the disease had progressed. Many patients had trouble walking, planning meals, using the bathroom, as well as difficulties with many other everyday activities. The last choice that they had was to put their loved ones in facilities that could provide daily care for them.
As far as role ambiguity, most of the individuals had become accustomed to their role as caregiver, but many stated how other immediate family caregivers were not as aware of what needed to be done from day to day. While many were not aware of what roles they were expected to play in the individuals’ lives with the sudden onset of dementia, one couple in particular had become more accustomed to what part they played in the patient’s life due to the fact that he had been caring for his father who, also, had dementia. When his wife’s mother was diagnosed, the couple was more educated on what dementia is and what type of decline was to be expected of her mother.
Role captivity was not shown in this study. Those who had the desire to be caregiver did not seem to be any less stressed than those who did not want this role. However, the quality of care seemed to be significantly greater for those who had the desire to be the primary caregiver. Many who desired to be the primary caregiver spent their entire day with the patient, putting aside many other pleasures that could have been enjoyed.
The attachment theory was definitely shown a great deal. Those who had been caring for the individual for a great length of time had grown very close to their loved one. Some even commented that their love for the individual had grown stronger in the time that they had spent as caregiver.
The social exchange theory was evident in this study, as well. The spouse caregivers had become accustomed to their role in the individuals’ lives prior to the onset of dementia. Many stated how hard it was to take on the role that their spouse had for so many years. Most women were not used to having to take care of the maintenance work at home. Some men did not understand how to take care of what, in the days of their youth, were considered a lady’s tasks.
Gender had a significant impact on how comfortable the caregivers were with caring for their loved one. Many males, due to the time period and customs in which they had grown up in, did not feel comfortable taking care of their loved ones, personally. Many were not comfortable bathing or changing the diapers of their mothers. Women, however, felt differently about this and were comfortable taking care of their loved ones in this way.
There appears to be little understanding of how to lessen the burden that individuals must carry when caring for individuals who have been diagnosed with dementia. Not only are the caregivers encumbered with the everyday task of caring for the dementia patient; many live in loneliness and isolation, having lost contact with family members and friends that they once held so dearly.
Grief is a deep sorrow and bereavement caused by the loss of a loved one. When an individual has dementia, they are still with us, physically, yet it is hard to connect with them verbally and emotionally. The type of grief felt in this type of situation is referred to as anticipatory grief (THIS EMOTIONAL LIFE 2011). In many cases of anticipatory grief, individuals are able to make amends to past issues. However, with the grief felt with a loved one having dementia, individuals are not able to make restitution for past issues because the individual is no longer able to communicate well and may not even remember the dispute. Elisabeth Kübler-Ross introduced five stages of grief, in 1969 (THIS EMOTIONAL LIFE 2011). The five stages are in a set sequence—denial, anger, bargaining, depression and acceptance. These stages were seen a great deal in most cases in this study. Many individuals did not want to admit that their loved one had been diagnosed with dementia. Eventually, most had come to accept that their loved one had dementia and were trying to enjoy what time they had left with the individual.
The stigma which is usually placed upon the dementia patient, in recent years, has been transferred to the caregiver, as well. This stigma has been prominent in deterring caregivers from pursuing help from services that could potentially lessen the burden that they endure (Werner and Heinik 2008). Many are less apt to seek help due to the negative connotations that are made towards the dementia patients and caregivers.
Many yearn for an understanding and advanced treatments that we have not yet found. Further research and financial support from the government is needed to help further our knowledge in the treatment and prevention of dementia. When meeting with support groups for caregivers, a great disposition towards a day support for dementia patients was shown. This would give the caregivers a break from time to time which would in turn lighten the load that they must carry. Further research is needed not only in how to treat the dementia patients but, also, in how to lessen the burden that caregivers must carry.
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