Parkinson disease (PD) is a common neurodegenerative disease in the older adults. It is a chronic, progressive, and irreversible illness of the central nervous system. It belongs to a group of conditions called movement disorders, which result from the loss of dopamine-producing cells in the brain (National Institutes of Health, 2012). It is characterized by the presence of severe pars-compacta nigral-cell loss and accumulation of aggregated α-synuclein in specific brain stem, striatum, and cortical regions. The main known risk factor is age (Lees, Hardy, & Revesz, 2009). About one million people in the United States and 4.1 million individuals worldwide have PD. In Taiwan, 1 of every 100 people over the age of 65 years has PD as do 2 in every 100 people over the age of 75 years (Taiwan Health Foundation, 2012). The four primary symptoms of PD are tremor, rigidity, bradykinesia, and postural instability (National Institutes of Health, 2012). Symptoms such as shuffling gait, loss of dexterity, festination, freezing of gait, hypophonia and loss of articulation, and falls because of loss of postural reflexes. The forward-leaning posture, shuffling, and shaking become more severe as the disease progresses (Factor & Weiner, 2008). The patient thus becomes dependent, needs more assistance from family members, and begins to worry about losing control over the disease (Backer, 2000). Hoehn and Yahr (1967) divided the course of PD into five stages, from the mildest to the most severe. At present, PD has no cure, and most treatments concentrate on ameliorating and easing the symptoms to preserve the patient’s normal functions in daily life as much as possible. Treatments include medications, surgery, and rehabilitation (Chiu & Yang, 2002).
In addition to increasing handicaps in daily life, gradual worsening of the condition, loss of independence, and decrease in mobility, patients with PD also face issues involving psychological adjustments, coping mechanisms, and social problems. They do not only need medical resources and information, but they also require psychological assistance, social support, and assistance with planning to successfully adapt their lives to the disease (Caap-Ahlgren & Lannerheim, 2002). Some scholars argue that, because of changes in their appearance and development of mobility problems, these patients often attract unwanted attention. As a result, some individuals withdraw from social relationships, become isolated from society, and even develop low self-esteem and a sense of helplessness. As the disease progresses, they may become more dependent, require family assistance at home, and begin to worry about not being able to control the disease. All these factors create a considerable psychological burden (Jacopini, 2000).
Hayes (2002) explored the issues that most concerned patients with PD, including “Which medications are most effective? How to improve in symptoms? What medications am I taking? What exercises can I do? How can I remain independent? How to seek medical assistance?” In addition, some scholars used qualitative interviews to understand how patients experienced PD. Phillips (2006) found that, when patients are told they have PD, they feel like they have been hit by a bombshell that blows their lives totally apart. Marr (1991) used a phenomenology approach to study patients’ experience of living with PD; results showed that the themes of living with PD involved the impact of the disease, dealing with the disease, maintaining independence and normality, and trying the best. Whitney (2004) indicated that learning how to accept limitations, seek knowledge, engage in meaningful experiences, and live for today are key elements that maintain quality of life (QOL) in older individuals with PD. Caap-Ahlgren and Lannerheim (2002) examined how the symptoms affect women with PD and found that they wished for a stable body image, for the ability to retain traditional female competence, for the need to feel accepted for the person she is, and for control over the perceived stigmatization. The study by Habermann (1996) on the daily care requirements of middle-aged patients with PD showed that demands directly attributable to the illness included acknowledging symptoms and seeking help, balancing emotional responses, dealing with a changing body, gaining formal and practical knowledge, and dealing with unpredictability. The illness also creates demands related to changing roles, the sense of identity, and relationships. These factors indicate that the nature of PD affects patients’ mental and physical states as well as their QOL. Yet, although consequences on the QOL continue to exist every day, the gradual worsening of the disease will have additional impacts on the individual’s work, leisure, and social and daily life.
PD can progress over a period of 10–15 years or longer (Wu, 2007). During this lengthy period, from the impact of the initial diagnosis to the growing restrictions on the patient’s bodily functions, different stages of the disease involve different care issues and demands. Moreover, given that the older adults are the main age group affected by PD, they have to deal with the impacts of this drawn-out disease along with the natural aging process. What are the difficulties and care demands in each phase? To date, no study has thoroughly explored the care needs of this group. The aim of this study is to determine and understand the experiences of older Taiwanese individuals during the different stages of PD. The findings can be applied to help them adapt to life with PD at each phase of the lengthy illness by providing them with appropriate care.
A qualitative research design with an in-depth interview method was used to gather information on the subjective aspects of the experience of having PD. The semistructured interview guideline (Table 1) was created after discussions with three senior researchers who specialize in qualitative study, elderly care, and PD. Before we collected the data, a pilot study was done to assess the appropriateness of the interview guideline.
Purposive sampling was adopted. Data were collected at a neurology department of a medical center in northern Taiwan. The sampling criteria were the following: (1) aged 65 years or older, (2) presence of PD by a neurologist using the criteria of diagnosis of Parkinson disease (Gelb, Oliver, & Gilman, 1999) and the scale of Hoehn and Yahr (1967) at stages 1–4 diagnosed, (3) no obvious cognitive impairments (scored ≥23 on the Mini Mental State Examination), (4) able to communicate and express clearly in Mandarin or Taiwanese, and (5) consent provided for participation in the study.
Nine men and six women, aged 65–80 years (average, 73 years), participated. Three participants were in PD stage 1, five were in stage 2, four were in stage 3, and three were in stage 4. Most of them had an elementary education and reported having lived with the disease for 4–20 years.
Data Collection and Analysis
The study was approved by the institutional review boards of the National Taipei University of Nursing and Health Sciences and a teaching hospital located in Northern Taiwan. During the sampling period, before the formal closure of patient recruitment, researchers had 4 weeks of clinical field observations in the hospital to familiarize themselves with the treatment environment and the possible participants. Whereas the patients completed their outpatient treatment, potential participants were approached and given written information that explained the study.
Each participant completed one interview. The interviews lasted between 40 and 60 minutes each, depending on the need of each individual. During the interview, the researcher would clarify the questions and responses repeatedly to ensure that all the recorded contents were correct. The researcher continued to collect data until saturation was achieved. The constant comparative method, as suggested by Denzin and Lincoln (1994), was applied in this study to identify the most suitable themes through repeated analyses of a number of categories.
Trustworthiness of the data was established using the criteria established by Lincoln and Guba (1985): credibility, transferability, dependability, and confirmability. In this study, all the interviews were conducted by the first author to retain the consistency of the interview. In addition to the 4 weeks of clinical field observations mentioned above, the patients’ neurologists introduced the author to potential participants so they could know each other and establish trust for the interview process. The typed transcripts were carefully checked by listening to each tape again to ensure the accuracy of the transcripts. If questions occurred to the interviewer later, the participant was called immediately for validation. To ensure the accuracy of data analysis, the authors continued to reflect on and discuss the “fit” between the interview data and results; senior researchers in the qualitative method, elderly care, and neurology and the participants were invited to verify the results.
Besides written information provided during recruitment, the purpose and process of the study including participant’s right and protection of identity were discussed, and a signed consent form was obtained before the interviews. During the interview, when sensitive issues and information were raised by the participant, support was provided to maintain the confidentiality of the process. In the transcript and the report, the participant’s name was deleted and the patient was identified by letter (A–O).
Four major themes were identified in the experience of PD: (1) stage 1, ignorance about the symptoms; (2) stage 2, loss of control; (3) stage 3, continuous deterioration; and (4) stage 4, a deep sense of helplessness. Each theme also contained several subthemes, as illustrated in Figure 1.
Stage 1: Ignorance About the Symptoms
Most participants described that they did not sense having PD at the beginning because the symptoms were not noticeable and they did not understand anything about the disease.
Detection by Others
For participants, the symptoms of PD were not significant at the onset of PD; the disease had little impact on their daily lives and caused little discomfort. Others detected the symptoms rather than the participants themselves. They sought medical advice after being alerted by others.
People saw me and asked ‘how come your hands keep shaking?’ I thought I probably just got old and weak and get tired more easily, so I didn’t pay much attention. (N)
Failure to Realize Threat of the Disease
Participants described that initially they had minimal understanding about PD. In addition to the mild symptoms at the onset, the disease did not develop rapidly. Thus, they did not realize the threat posed by PD. For example, participant E said: “I didn’t know much about this disease at the beginning, so I didn’t know how worried I should be.”
Incomprehension of the Cause of the Disease
At the onset of PD, patients wondered why they were experiencing the disease. They stated that no one else in the family had it, that they had never even heard of it, and that they did not understand why they had it. For example, participant N said: “Of course I didn’t understand! That’s why I thought I had a mild stroke. At the beginning, I couldn’t believe that I had this disease.”
Stage 2: Losing Control
Participants gradually lost control in their daily lives, and their limb movements became impaired. As daily activities became increasingly limited, they longed for consideration and compassion, feared being alone, and worried about the future.
Loss of Control Over Limb Movements
As the disease progressed, patients gradually lost control over their limbs. When they wanted to move, they could not move as easily as expected, and when they wanted to slow down, they rushed ahead involuntarily. Stiffness in their limbs also handicapped their movements. Their weakened sense of balance and lack of control over movement often resulted in falls.
I want to walk more slowly, but I just speed up spontaneously. I can’t help it...walking like that means I stumble easily. So far, I’ve had more than 10 falls, and I’ve had the same scars again and again. It just takes a slight loss of balance, and I can’t hold myself. I just fall. (K)
Being Constrained in Daily Life
The loss of control over their limbs created considerable problems in daily life for participants. For instance, putting on and taking off clothes took much more time than before. They noted some changes in their physical abilities and were often dismayed by failure despite great effort. As the sense of balance deteriorated, participants always worried about falling and needed to be extremely cautious at all times.
Longing for Consideration and Compassion
Despite the impacts of the disease on daily life, some participants could still look after themselves. However, sometimes, when their arms and legs would not listen to them, they craved attention and compassion from friends and family. Family support was the greatest motivation in combating the disease. Participant A, for example, mentioned: “When I got ill, my family all took me to see the doctor. My sons are all very filial to me and care a lot about me. It’s because of them that I have the courage to face this disease.”
Fear of Loneliness
Participants described that, during daytime, most family members were either at work or at school, and they did not like to be home alone. Their idle minds wandered; for example, participant L said: “When I’m home alone, I think a lot of rubbish.”
Worrying About the Future
Several participants had contact with patients who died from the complications of PD and reported becoming frightened that, one day, they would also become just like them. Participant K said, “I’ve been to the support group several times, and I saw many patients who were worse than me. It makes me wonder if I will become just like them in the future, so I feel even worse after meeting them.”
Stage 3: Gradual Deterioration
During this stage, the physical capacity of the body decreased day by day and began affecting the patient’s social activities. This stage covered five subthemes, including the gradual deterioration of bodily functions (increased difficulties with climbing and descending stairs, growing speech problems), significant decreases in social activities, omnipresence of the disease, craving to be treated as normal, and learning to live with PD.
Gradual Deterioration of Bodily Functions
Elderly patients entering stage 3 of PD began to recognize the gradual deterioration of their bodily functions, especially in their increasing difficulties with stairs and growing speech problems. Climbing and descending stairs became extremely difficult and could result in falls at any time. Often, walking a small step was hard work, and what used to be simple tasks became insurmountable challenges. The increasing slowness in movements and reflexes and the disheartened feeling of failure were all indications of the patients’ shrinking independence.
Once I fell when I was climbing up some stairs. I just laid there and couldn’t get up. I moved very slowly. I had to move slowly. And now, because I’m scared of falling, I move even more slowly. (J)
Participants’ speech patterns slowed and were often unclear. As a result, they were frequently misunderstood or thought to have mental problems. These participants were very dispirited about their inability to express themselves clearly despite having a sound mind. Their frustration could be strongly felt.
When I speak, what comes out is fragmented and incoherent. People don’t understand me and think I’m an idiot. In fact, I’m very clear in the head. It’s really an awful feeling. (I)
Significant Decrease in Social Activities
As their movements slowed and speech became slurred or unclear, the ability of patients to socialize also decreased significantly. Participant J mentioned that, since falling ill, he has stayed home almost all the time. Many other participants also mentioned that they have become much less talkative for fear of not being understood. The more they worried about making mistakes, the less likely they were to venture out. Some of them even expressed that they were unwelcome when they went out, so they retreated into their home environment. This, indeed, reflects their notion of “out of sight, out of mind.”
Omnipresence of the Disease
PD has no cure, and current treatments can only suppress symptoms. The involuntary tremors constantly remind these patients of the presence of PD. Participant G, for example, said: “It only gets worse, and all we can do is be apprehensive of life. This illness is not painful but very restraining. It follows you everywhere.”
Stage 4: A Deep Sense of Helplessness
Participants felt a deep sense of helplessness when their PD moved into stage 4. They were upset about the fact that the disease has no cure, yet they would not die of it. They worried that the symptoms would worsen, making them eventually a burden for their children. They were dismayed at their dependence on others. They feel guilty toward their offspring for the financial and mental pressures the disease created because no one could know how long it would continue.
The symptoms of early PD are hard to differentiate from the natural aging process, with patients often thinking that their slowing reactions are because of aging, and therefore, they overlook the symptoms. Phillips (2006) described the reaction of patients when first diagnosed with PD as having a bombshell dropped into their lives, making everything fall apart. This differs somewhat from the outcome of this study, where most elderly patients were not worried because initially they only had minimal understanding about PD. All participants in this study were over 65 years old, older than those in the study by Phillips.
Studies have shown that only when individuals have the ability to detect symptoms and their changes are they able to handle the illness and prevent threats from the disease (Fussman, Rafferty, Lyon-Callo, Morgenstern, & Reeves, 2010; Mosca et al., 2000). Lack of thorough understanding will influence the reactive measures taken when faced with the disease (Lin, 2005). Therefore, the medical and nursing staff must inform patients correctly in the early stages of PD about its symptoms, causes, treatment, course, and possible reactions to medications, so that patients can have a better understanding of the disease. Medical and nursing staff should use a language that the patient understands to thoroughly explain to both the patient and family members about the nature of PD, how it is treated, how it may develop, and what reactions can be expected from medications. Medical personnel must also stress to the patient and family the importance of medication and that they should not ignore the illness simply because the symptoms are not severe.
During stage 2, elderly patients have a sense of losing control. According to the study participants, although they can still look after themselves, they become very anxious when the effects of the medication disappear and their reactions slow down before the next dose is taken. As PD progresses, levodopa needs to be taken more frequently to maintain good motor control because of wearing off, and also, the regular “by the clock” dosing of Sinemet becomes increasingly important (Pahwa & Lyons, 2009). A previous study did not explore the loss of self-control caused by PD. However, many scholars have investigated similar effects caused by other diseases such as cancer, stroke, and rheumatoid arthritis (Hamama, Ronen, & Feigin, 2000; Vickery, 2008). They showed that patients are deeply influenced by the long-term illness, chronic pain, and limited motor ability. Their inability to move their bodies normally can easily cause adverse changes in their self-perception, self-conception, and ultimately, self-esteem (Chang & Lee 2000; Chan, Liu, & Chin, 2006). Furthermore, Lin’s (2003) interviews with seniors also revealed that limited mobility will damage their self-esteem and make them feel the loss of self-control over health. Limited mobility is a factor that leads to an elderly person’s perception of a lower QOL. Many specialists have pointed out that, when patients show signs of low self-esteem, medical care should be concentrated on encouraging them to come forward and share the changes and needs they perceive. Assistance should be provided to help them overcome the impact of the disease and to help their family express hope and support; participation of family members can give patients the courage to face the challenges of the disease (Chou & Cheng, 2004). In addition, medical and nursing staff should proactively ask how the medication is working to reduce patients’ anxiety about losing control over their limbs and to eliminate inadequate symptom control because of irregular medication usage.
Patients with PD crave compassion and company when they gradually lose control. Family is the main source of physical and emotional support for chronically ill elderly people (Ebersole, Touhy, Hess, Jett, & Luggen, 2008). Apart from continued regular medication usage, nurses should help elderly patients with PD and their families understand the progression of the disease. In addition, nurses should carefully observe the mood changes in the patients and give them timely, compassionate encouragement and emotional support.
In stage 3, as the condition worsens, patients will become less able to look after themselves. Studies have shown that, for these patients, changes and deterioration in posture, gait, motion, and speech will be exacerbated with time. The tremor in the arms and legs, rigidity of the joints, bradykinesia, and postural instability have a severe effect on a patient’s daily life (Backer, 2006). Many participants mentioned their growing difficulty with stairs, but none changed their living habits because of this inability. Their bedrooms remained on the second or third floor. As a result, they needed assistance each time they wanted to climb or descend the stairs and had reduced activity for fear of falling. Medical and nursing staff should make family members aware of the importance of making changes in the living environment. If finances allow, we suggest moving the patient’s bedroom to the ground floor or moving the patient to a building with an elevator to decrease the risk of injury caused by stairs. Therapists should also help the family rearrange their living environment to create a safe space for the patients.
Although falls are serious at any stage of PD, as the illness progresses, patients in stage 3 are at a relatively higher risk of falling because of their increased postural instability. Previous studies have shown that causes of falls can be divided into internal physical factors and external environmental factors. External factors include improvements that can be made to the outdoor and indoor surroundings to decrease the risk of falls for elderly patients (Huang & Liao, 1993). Other studies pointed out that around one third of elderly patients decrease their normal activities because of fear of falling. Such fear will speed the decline of their bodily functions and lead to depression and social isolation (Cumming, Salkeld, Thomas, & Szonyi, 2000; Tsai & Lin, 2002). This information illustrates the importance of providing a safe living environment to reduce the risk of falls. Genever, Downes, and Medcalf (2005) studied 6,000 elderly people over age the 65 of years and found that elderly patients with PD are three times more likely to fall than normal, highlighting the importance of a safe environment for these elderly individuals.
As mentioned in the above studies, the forward-leaning posture, shuffling, and tremor can easily attract unwanted attention, causing patients to retreat from public life, isolate themselves from society, and develop problems such as low self-esteem and a sense of helplessness (Hagell, 2000; Jacopini, 2000). According to Schreurs, Ridder, and Bensing (2000), patients with PD experience not only physical handicaps, but they also encounter social problems and psychological autonomy and communication issues. These findings are consistent with the significant decrease in social activities found in this study. Medical and nursing staff should encourage patients to express their feelings and should show compassion at the right time, helping the patient adjust emotionally and find support. Mutual encouragement in support groups can also give patients with PD a sense of belonging, help them decrease their feelings of isolation, and regain a positive outlook. In this study, some participants expressed that support groups created a communal cohesion among patients. Not only can this increase their social activities, it also can help them regain confidence while allowing them to discuss their pain and suffering and gradually accept living with the illness. Moreover, many specialists pointed out that social support is as a key factor for the older adults to maintain their daily lives (Tremethick, 1997).
Some elderly people adapted their daily routines to reach a balance between the self and the outside world, to be able to live with PD. One participant said that his or her way of coping with the constrictions of the disease was to spend more time on preparation. Such a method can effectively reduce the time people have to wait for him/her and in return decrease frustration and increase the time spent with family. This finding corresponds with that of Lin and Wu (2001), who found that patients with chronic diseases convert the illness into a kind of life experience, accepting it as a fact of life and establishing a new set of routines in response. Nurses may encourage those who have learned to successfully live with PD to share their experiences with other patients, because this will not only increase their own confidence but will also bring hope to more anxious sufferers and help them adapt to life with PD.
Elderly PD patients in stage 4 have reached a point at which they are dependent on their family’s assistance. They worry about burdening their children and cannot dispel the feeling of being a liability to their family. In fact, elderly patients experience great mental stress during this stage. Miller (1992) pointed out that elderly people easily develop such feelings of uselessness when faced with accumulated loss and pressures. When medical and nursing staff or family take care of elderly patients in stage 4, reducing this sense of impotence is crucial. Many scholars mentioned that an introspective life review can be adopted to reflect on many psychological levels. Through this process, patients can further recognize the nature of life, try to adjust to their losses, and find a balance between self-integration and despair. When nurses are dealing with chronic diseases, they often are on the frontline of patient care. They need to create opportunities for patients to express their feelings about the illness and provide them with sufficient information, so that patients can better understand their condition and foster a hopeful belief system that allows them to live with control. This can give them a sense of power and reduce their feelings of impotence (Haber, 2006; Lee & Lin, 2004; Liao & Lin, 2008). Whitney (2004) used phenomenology to develop methods of learning to face the illness, accept constraining conditions, search for knowledge, concentrate on meaningful experiences, and live in the moment. All these were considered as important factors for maintaining QOL in elderly patients with PD. Therefore, medical and nursing staff should encourage patients to accept disease-induced limitations and concentrate on the things they are able to do. Through retrospection on their lives, patients can increase the value of their existence and find the real meaning of life. If any patients with PD feel guilty toward their family, nursing staff should also act as a bridge between them and the family. Nurses can encourage family members to express their caring and support for the patient. Such support can reduce the patient’s psychological burden and enable the patient to accept the care and assistance, which can also help the individual adapt to the condition.
In this study, efforts were made to cover all age groups and stages of patients with PD during data collection, and saturation of data was reached. Nevertheless, the source of information was confined to a small sample size in one teaching hospital in the northern Taiwan. Future studies should consider widening the scope of data collection across different geographic areas to increase the value for practical application.
The findings can be applied to help older patients adapt to life with PD at each stage of the chronic illness by providing them appropriate care. By understanding the perceptions of elderly patients at different stages of PD, this study has organized the key care requirements into four stages. These include the following: (1) provide more information on the disease in stage 1, (2) increase guidance on regular medication usage and establish a support system in stage 2, (3) highlight the importance of a safe living environment and encourage participation in support groups in stage 3, and (4) assist patients to find the meaning of life and value of existence in stage 4.
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Keywords:: different stages; experiences; older; Parkinson disease