Young Women with PD

Social Work in Health Care

ISSN: 0098-1389 (Print) 1541-034X (Online) Journal homepage: http://www.tandfonline.com/loi/wshc20

Young Women with PD Jennie Posen MSW , Orna Moore RNBA , Dafna Sadeh Tassa MSW , Karni Ginzburg MA , Margalit Drory MSW & Nir Giladi MD To cite this article: Jennie Posen MSW , Orna Moore RNBA , Dafna Sadeh Tassa MSW , Karni Ginzburg MA , Margalit Drory MSW & Nir Giladi MD (2001) Young Women with PD, Social Work in Health Care, 32:1, 77-91, DOI: 10.1300/J010v32n01_06 To link to this article: http://dx.doi.org/10.1300/J010v32n01_06

Published online: 13 Oct 2008.

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Date: 21 February 2017, At: 02:05

Young Women with PD: A Group Work Experience Jennie Posen, MSW Orna Moore, RNBA Dafna Sadeh Tassa, MSW Karni Ginzburg, MA Margalit Drory, MSW Nir Giladi, MD

ABSTRACT. Parkinson’s Disease (PD) prior to the age of 40 affects between 5-10% of the PD population. The psychosocial changes that patients with early PD encounter, may be more devastating and disabling than the actual motor disability. The paper describes a unique experience in groupwork with young female PD patients treated in the Movement Disorders Unit of the Tel Aviv Sourasky Medical Center. The paper focuses on the special issues which characterized this group’s experience: stigma, body and sexual image, and personality traits. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: Website: E 2000 by The Haworth Press, Inc. All rights reserved.]

KEYWORDS. Parkinson’s Disease, young-onset, stigma, body image, personality, groupwork

Jennie Posen is affiliated with the Movement Disorders Unit, Department of Neurology, and Social Work Department (E-mail: [email protected]). Orna Moore is Head Nurse-Coordinator Nurse, Movement Disorders Unit, Department of Neurology (E-mail: [email protected]). Dafna Sadeh Tassa is affiliated with the Social Work Department (E-mail [email protected]). Karni Ginzburg is affiliated with the Social Work Department (E-mail: [email protected]). Margalit Drory is Head, Social Work Department, (E-mail: [email protected]). Nir Giladi is Director, Movement Disorders Unit, Department of Neurology (E-Mail: [email protected]) All authors are affiliated with Tel Aviv Sourasky Medical Center, 6 Weizman Street, Tel Aviv, Israel. Social Work in Health Care, Vol. 32(1) 2000 E 2000 by The Haworth Press, Inc. All rights reserved.

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SOCIAL WORK IN HEALTH CARE

INTRODUCTION Parkinson’s Disease (PD) is a multi-system neuro-degenerative progressive disease characterized by tremor, rigidity, bradykinesia, and postural instability. PD is an age-related disorder that affects approximately 1% of the population aged 65 and older, with its prevalence increasing with age. In addition, the disease is slightly more prevalent in men than in women (Sutcliffe & Meara, 1995). Although PD prior to the age of 40 is rare (Quinn et al., 1987; Koller & Dekker, 1992), young onset PD is estimated to affect between 5-10% of the PD population (Gershanik & Nygaard, 1990; Barbeau & Pourcher, 1982). The literature indicates that patients with younger age of PD onset differ from older patients in a number of symptoms (Quinn, Critchley & Marsden, 1987; Koller & Dekker, 1992). Young patients tend to have more tremors while their balance and walking is more preserved than in older patients. Cognitive abilities are less impaired and dementia is also less frequent in young patients (Levin & Katzen, 1995; Giladi et al., 1999). However, depression is more frequent in younger patients (Giladi et al., 1999). Studies have shown that young onset PD patients generally have a better response to Levodopa1 (Barbeau & Pourcher, 1982 in Quinn et al., 1987), but suffer from early and more severe motor fluctuations and Levodopa induced dyskensia (Quinn et al., 1987, Schrag et al., 1998). The literature suggests that chronic illness may entail emotional, family, social, and vocational dysfunctioning. These effects are especially complex when they occur in an early phase of the life cycle of the individual (Rolland, 1994). More specifically, some authors claim that the psychological and social changes that patients with PD at a young age experience, may be more devastating and disabling than the actual motor disability (Levin & Weiner, 1987; Brown & Jahanshabi, 1995). As a minority in the PD population, the young patients are often not the focus of clinicians and researchers. The current article aims to lessen this deficiency.

THE GROUP AS A FORUM The Movement Disorders Unit (M.D.U.) operates according to a holistic multi-disciplinary approach in treating a wide range of move-

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ment disorders. As such, and based on our experience with PD patients, the clinic team decided to promote a group which would cater for this population’s specific requirements. Group work with medically ill patients is recognized as a common and viable resource for patients coping with psycho-social and physical difficulties implicit in different diseases (Spira, 1997; Lasky & Dell Orto, 1979; Szekely, Kosanovich & Sheppard, 1982). Some concerns, such as adjusting to a new life style and level of functioning, are similar across disease types. Other primary concerns reflect the specific disease (Spira, 1997). Men and women respond differently in groups and display different needs and characteristics (Gagerman, 1991). Therefore, some authors suggest that single gender groups allow women to express more variation in style (Hodgins, Guebaly & Addington, 1997; Cohn, 1996), whereas mixed gender groups inadvertently inhibit women (Staats et al., 1998; Hodgins et al., 1997). The model utilized in our group was psycho-educational, which is a prevalent model in work with medically ill patients (e.g., Fawzy & Fawzy, 1994; Fawzy, Fawzy, Arndt & Pansau, 1995; Spira, 1997). According to this model, a major emphasis is given to providing health-related information, and the acquisition of coping skills relevant to the specific illness. The intervention is conducted in a support group format, encouraging intra- and inter-personal processes. The group was led by two social workers, one of whom worked as the clinic’s social worker, as well as by the M.D.U’s coordinator nurse and the leadership style reflected the tenets of a psycho-educational model. The group work was carried out over 12 meetings held on a fortnightly basis. Each group session lasted for one and a half hours and was held in the medical center in the early afternoon. The option of participating in our group was according to the following criteria: women with PD treated in the M.D.U. under the age of 60, with symptoms onset before 50. Twenty women answered these criteria. Since disruptive behavior is recognized as a contraindication for participation in a group (Yalom, 1985), two women who exhibited such behavior were screened out. The eighteen remaining potential participants were interviewed by the coordinator nurse who invited them to participate in the forthcoming group. Fifteen women registered to participate in the group, 12 attended the meetings and eight

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women participated on a regular basis. Three of the four women who preferred not to register or who chose to leave the group prematurely were newly diagnosed (less than one year). The age range of the participants was 35-59 years, with a mean age of 42.5 years at symptoms onset. Duration of symptoms ranged from 2-17 years. Stage of illness according to the modified Hoehn and Yahr stages (1967)2 was between 1 and 3. Nine women were working and employed in a wide range of professions. These included accountancy, teaching, business, nursing, catering and project organizing. Of the other three, one was a housewife, two were retired. One group member was divorced, all others were married. All had children with an age range from 3 to 30 years old. The Group Process MacKenzie and Livesley (1983) describe six phases of development for group work: engagement, differentiation, individuation, intimacy, mutuality and termination. According to MacKenzie and Livesley, in engagement a group identity is established and the content theme centers on similarities of problems and experiences. In differentiation, individual differences are emphasized. In the individuation phase, understanding develops through the individual’s reflective introspection. This is followed by intimacy when the group develops interpersonal involvement and allows reciprocal influence. During the mutuality phase, the focus expands to encompass broader responsibilities in relationships. The termination phase summarizes the group’s process. An analysis of our group indicates that it followed MacKenzie and Livesley’s model. In the initial stages of engagement and differentiation, our group established a group identity dealing with common issues, such as perception of illness, compliance, and treatment. In these sessions the participants were exposed to a variety of individual reactions to similar situations. This confrontation allowed the participants to acknowledge their differences as individuals and to proceed towards other crucial issues. As the group progressed to the intimacy and mutuality phases, participants shared in depth work place, parental, marital and partner concerns. The women sought ways to help each other and the mutuality was reflected in their reporting of other significant relationships and individual daily interactions. Herein, we describe the particular experiences of women living

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with young onset PD and a number of salient issues, which arose in the course of this single gender group. More specifically, the issues of stigma, body and sexual image, and the tendency to perfectionism, were dominant themes. Each issue was present throughout the group’s sessions, but came to the fore at specific stages of the group development. THEMES IN THE GROUP SESSIONS The issue of stigma arose immediately as the group began to establish it’s identity vis à vis the external world, in the engagement stage. PD patients often contend with misconceptions and prejudices about their disease. Montgomory (1998) suggests that these may have a greater impact on younger patients and their families. One of the major misconceptions regarding PD is that it is a disease which only affects old people. Many neurological signs that are considered indicative of PD seem to typify old age. Since movement deterioration often equals old, in our modern youth-centered society, this equation hints at an unexpected and unwanted status for young PD patients. One participant, in her 40’s, related sarcastically how her nine year old daughter informed the teacher that her mother couldn’t participate in the school trip because she was ‘too old.’ Many PD patients fear being dependent and a burden on others (Nanton, 1985). While the literature indicates that the course of disease progression is less rapid in younger patients (Levin & Katzen, 1995), it seems that the slower course for younger patients is not generally known. As one of the patients in the group said, ‘‘When the doctor told me I had Parkinson’s disease, I immediately thought of being in a wheel chair.’’ A common prejudice facing PD patients relates to their mental abilities. Studies show that while patients exhibit specific cognitive changes early in the course of the disease (Zimmerman et al., 1992), mild cognitive dysfunction does not necessarily progress to dementia (Mohr Mendis & Grimes, 1995). Moreover, younger patients exhibit a lower incidence of cognitive impairment and overall dementia compared to older PD patients (Levin & Katzen, 1995; Giladi et al., 1999). However, the participants in our group felt that in the public’s eyes, PD has a strong association with severe dementia. ‘‘To talk about Parkinson’s disease is not the same as to talk about diabetes or heart

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disease. . . . People who know it’s connected to the brain, presume it’s related to being nervous or insane or they presume that difficulty in speaking means being retarded.’’ The dilemma of ‘‘coming out of the closet’’ was a central concern in the group. The women were ambivalent over how much and to whom they should disclose their illness. One of the women in the group maintained that the discussion was irrelevant since given the overt physical symptoms of the disease it was not something they could conceal. However, other participants emphasized that the issue was less a function of concealing but rather a function of choosing what to reveal. For some of the working women, concerns about public perceptions of their mental capability was a major factor in not revealing the exact name of their illness in the work setting. One woman, a professional in an intellectually demanding occupation, said ‘‘I’m only willing to tell close family, not colleagues at work. They will think less of me.’’ Features of PD such as speech impairment, loss of facial expression ‘‘masked face’’ and symptoms such as excess salivation or dyskenesia is stigmatizing to the individual and effect their willingness to be in public (Singer, 1973). The young women’s self image and portrayal in society was important to them. Much embarrassment was expressed regarding physical symptoms, which occasionally caused particularly awkward situations. One patient was stopped on suspicion of shop lifting, her excessive hand tremor presumably portraying a guilty conscience. Another patient spoke of her feelings of shame and anger at being in a restaurant with friends, freezing, and having her daughter, unasked, cut up her food. In their eyes the illness humiliates them. ‘‘The illness arouses pity!’’ ‘‘I don’t want people to feel sorry for me . . . ’’ ‘‘I don’t want people to feel they have to help me.’’ Consequently, the feelings towards family and friends, dependency and independence are ambivalent. ‘‘We want people to relate to us as healthy, but at the same time we want them to understand that we’re ill.’’ The body was considered to be a traitor . . . letting the patients down in public. ‘‘The worst thing is trying to get your money out of your purse.’’ ‘‘Nowadays my body decides my life for me.’’ The women spoke with humor ‘‘I may be damaged goods but I’m first class damaged goods.’’ The affiliation to a peer group consisting of women patients with

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similar experiences alleviated feelings of alienation from a society wherein the patient is in the minority and vulnerable to stigmatization. The group served as a mirror for the individual and reflected in this mirror the patient was not alone and was not different. Sometimes the group functioned as a means for providing practical suggestions on coping with the specific misconception or stigma; sometimes it provided emotional support for facing such issues. The literature suggests a difference in the way men and women groups move through developmental stages (Hartung Hagen, 1983). It would seem that all women groups begin to work on intimacy and interpersonal issues at an earlier stage and at more intensive levels than groups that include men. In our group the women reached the intimacy stage after only three sessions. The communication was open and direct. It was characterized by free expression of deep felt fears, hopes and dilemmas punctuated by tears and laughter. As the group progressed to the intimacy and mutuality phases, participants shared in depth work place, family and partner concerns. Work was important for the women in our group and the majority were professionals. One, a nurse in a community clinic, was now limited in her ability to perform certain tasks and her employers wanted her to take early retirement. For S, who had worked as a nurse all her life, the blow to her self esteem was devastating and anger at the stain on her professional worth intense. One of the benefits of the group was in providing support and a forum for S to fight back and ultimately retain her job. Body image was another main issue at this juncture in our group discussions. The women spoke in images of being like a machine. ‘‘I feel like a car which is always in need of repair.’’ They felt disassociated from their body, ‘‘I feel like an electric switch sometimes on, sometimes off,’’ referring to the on/off phenomena many young PD patients experience in their motor state.3 Even prior to the onset of illness, for many women, body image is a fragile aspect in their intrapsychic and interpersonal life.’’ Women are so brain washed about the physical image that they should have that they rarely undress with eclat and are often apologetic about their bodies’’ (Greer, 1971). This vulnerability is likely to be exacerbated with chronic disease. Vamos (1993) classified aspects of body image in chronic disorders according to four dimensions of body experience: comfort, compe-

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tence, appearance, and predictability. Comfort refers to the alteration in sensory experience such as pain, tiredness, and quality of sleep. Competence relates to the evaluation of changes in functional ability, including cognitive, perceptual, respiratory, mobility, nutritional and sexual functioning. Appearance refers to changes in outward appearance and the obviousness of the disorder as evaluated by the patients and their environment. Predictability reflects the degree of variability, suddenness of change and age appropriateness of disability. Many of these components are relevant to young PD patients, especially impaired cognitive ability, mobility difficulties, tiredness and difficulties in sexual functioning, as well as concerns with outward appearance and age inappropriateness of disease. Consequently, they constitute a high-risk group for poor body image. Female patients who place a strong emphasis on body image are particularly vulnerable (see Welsh, Hung & Waters, 1997). A positive sexual self-image is related to a person’s self confidence in his or her desirability as a sexual partner: i.e., not just the extent to which he or she feels physically attractive, but also skilled as a lover and able to satisfy the partner’s needs (Schover & Sorenbuus, 1988). Chronic illness is likely to affect sexual self-image (Schover & Sorenbuus, 1988). The literature reports that a common problem in PD is a reduction in sex interest. Wermuth & Stenager (1995) demonstrated that 70% of PD women reported reduced libido and 80% experienced reduced sexual activity following their illness, that deteriorated with duration of illness and advance in Hoehn and Yahr stages. On the other hand dopaminergic treatment often causes increased libido as a side effect which frequently creates distress and avoidance of sexual activity (Stern & Lees 1982). In our group the reactions to the sexual issues were varied. One woman, who occasionally exhibited signs of depression, shared with the group her reduction in interest in sexual relations since becoming ill. She told how she tried to hide this from her husband, in order not to hurt him. One single patient reported with great happiness and to the delight of the group the successful start of a new romance. A young married patient, although often depressed, spoke of a honeymoon vacation and her positive sexual relationship with her husband. Not all PD patients find this harmony. In a study of group work with working age male and female patients and their partners, Brown and colleagues (1990) found a high degree of dysfunction not just in the

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patients but also in their partners. In our support group a young woman confided her fears that her husband had lost interest in her sexually because of her illness. As suggested by Schover and Sorenbuus (1988), the partner’s attitude to the illness affects the patient’s confidence in her self as a sexual partner. Generally the women expressed lack of faith in long term fidelity to a sick partner. Although individually they spoke of supportive relationships, one comment expressed strongly in the group was ‘‘A man is scared of a sick woman and finds a substitute for her.’’ Discussing this comment, the participants felt that in this context it was important for them to stress their illness as little as possible The women shared their emotions and reactions in this sphere and responded to each other with encouragement and support. This mutual support served as a means of empowerment in their vulnerable state. The concept of perfectionism was raised at various times during the group discussions. The women discovered to their surprise that they shared this common characteristic. In their opinion, this was a required prerequisite to PD. From the first and throughout all of the meetings a common thread that linked the participants was their struggle to prove themselves in all that they did. It is about a century, since the idea of a premorbid PD personality first emerged. Initially raised by Charcot in 1875 (see Todes & Lees, 1985), this concept is still under discussion. Some authors claim that no typical PD personality exists (Riklan, Weiner & Diller, 1959; Machover, 1957; Glosser et al., 1995). Others, however, point to common personal characteristics among PD patients. Booth (1948) described PD patients as constantly striving for what they considered to be an ideal personality. His patients appeared to him to be constantly struggling for independence and freedom from authority albeit within a framework of social conformity. Some authors have described PD patients as masked personalities, with an excessive degree of self-control, repressing emotional and instinctive drives (Booth, 1948; Ward et al., 1984). A review of the literature reveals repeated reports of the following characteristics: industriousness (Mitscherlich, 1960), loyalty (Menza, Forman, Goldstein & Golbe, 1990), rigidity (Menza et al., 1990), and low novelty seeking tendencies (Menza, Golbe, Cody & Forman, 1993). The tendency to perfectionism was both a help and a hindrance in coping and adjustment to the women in the group. The women were

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unwilling to ‘‘give in’’ to disease. They insisted on attempting to lead a full life despite the illness. However, this same tendency to do everything at a high level caused them difficulties. Their dominant need to be successful in all undertakings when confronted by the limitations caused by chronic disease resulted in difficulties in adjustment at work and home and ongoing frustration for many participants. It was important for them to be perceived by themselves and by others as achievers, as high-powered workers, mothers, wives and housewives. The working women in the group expressed their need for a spick and span house and quality time with their children. They lacked energy, but were ambivalent in their ability to ask for and receive help. ‘‘Everybody demands and no one gives.’’ ‘‘I can’t wait for others to do it.’’ ‘‘I never ask for help from my family.’’ ‘‘I don’t know how to ask.’’ They had difficulty in legitimizing for themselves physical limitations forced on them by the disease. ‘‘It’s not the image I want to convey.’’ The group successfully encouraged an exchange of coping techniques to improve emotional and functional adjustment in this sphere. The last two sessions were dedicated to the group’s termination and separation. The group work was summarized and the group discussed how receiving support and allowing intimacy and openness in the group setting affected relationships with significant others outside the group. The participants emphasized that the group had contributed to their adjustment to the disease and provided them with additional resources for coping. The women had difficulty in separating both from each other and from the group setting and this was manifested by both their initiative in organizing a social meeting, without the group leaders approximately a month after the group termination and their request for a follow-up group. DISCUSSION In the article we described a number of issues which were raised in group work with women with young onset PD. Some of these are common concerns to patients suffering from chronic disease, such as disabilities arising from the disease, the affect on body image, the need for emotional and instrumental support and the difficulty in accepting this. On the other hand some salient issues which were raised are distinct

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concerns for young onset PD patients. Stereotypes and misconceptions which accompany this disease, such as PD being an old persons’ disease, and having a strong association with cognitive deficiency, affected the manner in which the patients were perceived both by themselves and by their surroundings. Consequently, the subject of ‘‘coming out of the closet’’ was one that was emphasized as in other stigmatized diseases. Stigma may also affect willingness to participate in a group of young PD patients. Almost half of the women who initially expressed interest in the group did not participate on a regular basis. Although this rate of drop out is not unusual in groups (Yalom, 1985), it is important to note this tendency. In part this can be explained by objective causes such as distance, mobility difficulties and the need to fulfill a variety of social roles but as discussed, stigma is a major issue for young PD patients. Nearly all those who dropped out from our group were newly diagnosed (less than one year). It could be that the difficulty of being associated with a disease that is defined on the basis of an ‘‘old persons’ disease’’ is too much for the very new and that at this stage these women are best helped on an individual basis. The other distinctive feature uniting the women in our group was their common tendency to perfectionism. Although some authors recommend a heterogenic group in order to balance and facilitate the development of therapeutic interchanges (see Yalom, 1985), we found the fact that many women in the group shared this common personality characteristic of perfectionism, enabled the group to function as a mirror for themselves. Issues of body image and sexuality were very relevant to these women. Although most women, healthy and ill share these concerns, the issues raised were colored by the special characteristics of PD. The discussion on these topics was open and the fact that the group was single gender may have contributed to this and made this an appropriate forum for such patients. The literature suggests that women tend to be more open than men in expressing feelings with others and work on intimacy and interpersonal issues at a more intensive level than when in groups which include men. (Gagerman, 1991; Hartung Hagen, 1983). It is likely therefore that women will be more responsive to discussion of intimate subjects in a single gender group.

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SUMMARY In the Movement Disorder Unit, medical and psychosocial treatment is provided through an integrative approach. This perspective encourages all staff members to adopt a comprehensive and holistic approach to patient care, and thereby seek ways to respond to the particular needs of specific populations. The issues raised by the women in the group enabled us as professionals to discover aspects pertinent to young PD patients coping with their disease. It also made us aware that compared with the general PD population, patients who first encounter the disease at an early stage of their life cycle must cope with the implications of PD for many years. This fact challenges professionals in health care to identify needs and supply optimal supportive care oriented to their unique experience. This descriptive article shed light on a specific population of women with young onset PD. The special issues that were raised should be studied systematically. Manuscript Received: 06/29/99 Accepted for Publication: 01/11/00 NOTES 1. The most common medicine taken by PD patients. 2. Clinical scale for PD severity. 3. Motor fluctuations consist of alterations between ‘‘on’’ periods, in which the patient has a good antiparkinsonian response, and ‘‘off’’ periods, in which the response to medication is suboptimal and the patient experiences worsening of parkinsonian symptomatology.

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