Adults with cerebral palsy: What’s happening?

Abstract

A total of 279 adults with cerebral palsy from across Australia responded to a survey which sought information about their health, modes of communication, access to information and perception of their own ageing process. Results indicated that 77% of the respondents believed that their physical condition was changing and 78% were taking medication. All but 11% indicated that the ageing process was having some effect on their lifestyle. A total of 22% had made retirement plans. Respondents discussed their health concerns with their family or attendants and 57% judged their general practitioner knowledgeable about cerebral palsy. The implications of the results for future service planning and delivery are considered.Although little is known about the life expectancy and ageing process of adults with cerebral palsy (Janicki, 1989; Pellegrino, 1995; Turk, Overeynder, & Janicki, t995), there has been some suggestion that the number of adults with cerebral palsy might be growing due to advances in medical care, particularly gastrostomy feeding, antibiotic treatment, and better management of respiratory infections, coupled with an increase in life expectancy for adults overall (Crichton, Mackinnon, & White, 1995; Murphy, Molnar, & Lankasky, 1995). Crichton et al. (1995) noted that the overall survival rate at 30 years of the 3,187 cases in their study was at least 87%, while Turk et al. (1995) concluded that most adults with cerebral palsy were generally healthy and could remain so as they aged if given better access to preventative health practices. However, Janicki (1989) noted that there is little clinical information on individuals with cerebral palsy who are ageing.In a study of 883 individuals with cerebral palsy and an intellectual disability aged 45 years and over, Janicki (1989) concluded that the life expectancy of individuals with severe cerebral palsy is less than that of individuals with intellectual disability or conditions other than those involving severe motor impairments. Kailes (1993) supported Janicki's (1989) observation that there was little information on individuals with cerebral palsy who were ageing. She also noted that there was little knowledge among health professionals on the issues faced by such individuals. Kailes (1993) reported that she had searched long and hard to find a medical practitioner who specialised in adults who had cerebral palsy. Anecdotal information concerning ageing with cerebral palsy has suggested that individuals with cerebral palsy are experiencing changes in their levels of fitness and ability which are both unexpected and unwelcome (Barrett, 1993;Kailes, 1993;Schwartz, 1994 ;Williams, 1993). Indeed, adults with cerebral palsy and those who deliver services to this population have both expressed some concern that individuals with cerebral palsy may experience negative effects of the ageing process earlier than nondisabled individuals (Barrett, 1993;Kailes, 1993;Turk et al., 1995). The results of a study of the medical and functional status of 101 adults with cereb...

The Loneliness Experiences of Young Adults with Cerebral Palsy who use Alternative and Augmentative Communication

“…Indeed, young adults typically rely less on family supports, including siblings, as they forge their own adult lives, with outside friendships and other types of close relationships becoming increasingly important (Stuart, Vanderhoof & Beukelman, 1993). However, adults with cerebral palsy who use AAC may be, for a variety of reasons, more likely to continue to rely on family members for support and as a buffer against loneliness (Ballin & Balandin, 2007;Balandin & Morgan 1997;, a finding that saddened the older adults who participated in the Ballin and Balandin study. The findings of the present study were consistent with Ballin and Balandin (2007): Many of the participants spoke about the importance of their families in mitigating loneliness and their resulting sadness when they did not have the contact they craved.…”

“…Given that an individual's communication needs and abilities change over time, clinicians who support individuals with cerebral palsy who use AAC also need to ensure that (a) ongoing therapy allows for changes to be made to devices as required (Schutz-Muehling & Beukelman, 1990) with minimal disruption to the user (a challenge reported by Amy); (b) individuals will be supported to learn to optimize use of their devices (a problem discussed by Gloria); and (c) that psychological, physical, and occupational services also be offered in order to ensure effective management of changes that may be associated with aging (Balandin & Morgan, 1997;Willner & Dunning, 1993). Ensuring adequate use and access to communication devices may facilitate social interaction and communication, resulting in stronger feelings of social connection, independence, and decreased feeling of loneliness.…”

“…The findings of the present study were consistent with Ballin and Balandin (2007): Many of the participants spoke about the importance of their families in mitigating loneliness and their resulting sadness when they did not have the contact they craved. It is important, therefore, that individuals with cerebral palsy obtain the supports they need as they age, particularly since they are less likely to have permanent partners and/or have children (Balandin & Morgan, 1997;; and because it is increasingly unlikely that their parents will outlive their adult sons and daughters. Such supports may include services offered to develop and maintain friendships.…”

“…In the Balandin et al (2006) study, the 20 participants with cerebral palsy who were considered ''older'' were aged 40 years and over. It has been suggested that people with cerebral palsy experience negative effects of ageing earlier than people without disabilities, with many perceiving the impacts of ageing from as early as their mid-20s (Balandin & Morgan, 1997;Kailes, 1993;Schwartz, 1994;Willner & Dunning, 1993). In Balandin et al, loneliness was measured using the University of California Los Angeles (UCLA) Loneliness Scale, which does not investigate the causes of loneliness.…”

Understanding mealtime changes for adults with cerebral palsy and the implications for support services

“…Furthermore, the disorder may be chronic, persisting into adulthood. There is evidence to suggest that adults with cerebral palsy experience a worsening of symptoms of dysphagia after the age of 30 years (Balandin & Morgan, 1997;Sheppard, 1991;Sheppard, 2002a;Sheppard, 2006). Dysphagia can undermine health and affect a person's dignity, self-esteem, and quality of relationships with family, friends, and carers (Kaatzke-McDonald, 2003).…”