Older adults with developmental disabilities, such as Down syndrome (DS), are an emerging sub-population of aging adults (Lane & Reed, 2019). Decades ago, individuals with DS did not live long due to physical health problems, particularly cardiac issues (Herron-Foster & Bustos, 2014). However, with improved medical treatment, these individuals are now living substantially longer lives, into their 60s and beyond (Canadian Down Syndrome Society, n.d.).
The blessings of a longer life raise some issues surrounding the care of these aging adults when their parents or family members can no longer provide assistance, particularly when some individuals with DS develop dementia. What environment is best for providing care to these aging adults, and what do staff need to know to provide effective care? Research examining what staff know—and need to know—about working with this sub-population is lacking.
The current article examines what nurses and other professionals have learned from working with aging individuals within a developmental disabilities program, particularly those with DS and dementia. Who “fits” within this sub-population is first described, and literature is outlined that describes the issues of placement when parents/family members can no longer provide care, such as where these individuals should relocate, as well as the knowledge needed by nurses and other professionals working with this sub-population. Findings from the current study examined what staff have learned from working with aging adults with DS and dementia. Based on these findings, practice implications are offered for nurses and other professionals who work within a program for aging adults with developmental disabilities.
Individuals with DS are considered old at a much earlier age than 65. Accelerated aging is in part related to changes of aging occurring earlier in this sub-population (e.g., visual and hearing problems, osteoarthritis, osteoporosis) (Haveman et al., 2011), as well as the increased incidence of dementia in individuals with DS in their 50s and 60s (Strydom, Chan, King, Hassiotis, & Livingston, 2013). Although studies vary, approximately 40% to 70% of adults with DS age 60 or older develop dementia (Strydom et al., 2010).
Parents of individuals aging with DS and dementia are faced with a difficult, weighty predicament: Who will look after their adult child when they are no longer able to provide care due to illness or death? Despite experiencing much anxiety as well as possessing a strong desire to continue providing care (Baumbusch, Mayer, Phinney, & Baumbusch, 2017; Iacono et al., 2016; Pryce, Tweed, Hilton, & Priest, 2017), eventually relocation in a facility may be necessary.
Where an aging adult with DS is admitted can be problematic. Group home staff may be adept at caring for individuals with DS but may not feel confident caring for those who have dementia. They may view residents' behaviors as being due to DS, rather than understanding the influence of dementia (Atkins Furniss, Loverseed, Lippold, & Dodd, 2011; Iacono, Bigby, Carling-Jenkins, & Torr, 2014; Kahlin, Kjellberg, & Hagberg, 2016). Conversely, staff within a nursing home may be confident caring for individuals with dementia but lack the requisite knowledge and skills to care for individuals with DS. As such, an understanding of what skills and knowledge are necessary to work with aging adults with DS is necessary.
Despite the fact that the number of individuals aging with developmental disabilities (including DS and dementia) will increase in the coming years (Dieckmann & Giovis, 2014), and thus, living environments outside the parental home will need to be secured, there is little research that examines the learning needs of those working with aging individuals with DS and dementia. Two exceptions were found. Atkins Furniss et al. (2011) found that family and paid caregivers of individuals living in group homes admitted to lacking information about dementia, as well as how dementia impacts DS. Similarly, Iacono et al. (2014) found that staff within group homes struggled to ascertain whether behaviors were related to DS or dementia. Staff wondered if behaviors were within the control of residents or outside their control (due to the progressive nature of dementia). Staff tended to interpret behaviors as related to DS rather than dementia, implementing techniques used for individuals with DS (Iacono et al., 2014).
There is a noticeable gap in the literature describing what nurses and other professionals need to know in working with individuals with DS and dementia. Although the knowledge described is not comprehensive for nurses and other staff members, it demonstrates useful learnings in terms of approaching this important sub-population of aging adults.
The purpose of the current study was to examine the effectiveness of education for staff providing care to aging individuals within a developmental disability program (where many individuals experience DS and dementia). As the program is small (i.e., ≤10 residents), a qualitative descriptive design was used, allowing in-depth examination of what education staff received before commencing their work in this program, the ongoing education received, and their challenges and learnings in working with individuals with DS and dementia. Specific relationships between factors (such as within quantitative research) were not determined; rather, an in-depth examination was performed of the phenomena of learning and education needed and received in working with this sub-population. As little is known about the educational needs of staff working with these individuals, this approach was deemed appropriate (Smith, 2007).
Residents are admitted to this long-term care facility in western Canada into a unit where they live and the program is delivered. Nursing staff are present 24 hours per day. This is a new and innovative program that is the first of its kind in western Canada. Many residents are aging individuals with DS who have concurrent dementia, which was diagnosed within the community or hospital. Prior to beginning the study, permission to conduct this research was received from the Research Ethical Board of the university, as well as from the governing board of the developmental disability program.
Sample and Recruitment
In total, nine individuals were interviewed, including nursing staff (i.e., RNs, licensed practical nurses, and health care aides [HCAs]), dietary and recreational therapy staff, and maintenance staff (who did not provide care but adapted the program environment for staff to provide safe care). Participants were recruited through posters placed in the nursing station within the developmental disability program and by word of mouth.
Nine semi-structured interviews were conducted between December 2017 and March 2018 with staff members who work in one capacity or another within this program. Interviews were 30 minutes to 1 hour and were digitally recorded. The overarching question for the study was: What are the educational needs, challenges, and rewards in working in this innovative program? Participants were asked how long they have worked in the program, what interested them in working with this sub-population of older adults, what training they received when they began their work (as well as ongoing education), and the challenges they have faced (Table 1). Interview data were transcribed to facilitate data analysis.
Questions for Semi-Structured Interviews
Data analysis was independently conducted by two members of the research team (A.M.L., M.B.R.). The analysis involved reading and re-reading transcripts for themes. As part of qualitative research, the first step involved going through the data to compare relationships, similarities, and differences. Different parts of the data were color-coded to identify themes for consideration and discussion between the two members analyzing data. Two members of the research team (A.M.L., M.B.R.) agreed on the themes; however, a third member of the research team (P.M.) would have resolved differences, if necessary (Bradley, Curry, & Devers, 2007), to promote trustworthiness of the analysis.
The following themes emerged from the data analysis: Importance of Learning From Each Other; Importance of Collaboration; How Individuals With Developmental Disabilities Communicate; Older Adults With DS and Dementia Differ from Older Adults With Dementia; and Residents' Impact on Staff.
Importance of Learning From Each Other
As there were only weeks between when the facility received notification from the health authority that they were chosen to provide care for this sub-population of older adults, participants noted that the education received prior to the commencement of the program was limited. However, participants spoke about the importance of learning from each other and drawing on past learning. All participants received education in managing responsive behaviors for dementia when they began their employment with the facility, and all had experience working with dementia. In addition, the program manager attempted to hire individuals who had prior experience with individuals with developmental disabilities.
As the program began with just one resident and did not reach near full capacity until approximately 8 months, staff had time to learn. The regional health authority provided education about different residents' diagnoses. Participants read articles that they passed around to their colleagues, collaborated and strategized with each other, and learned from leaders who modeled how to effectively work with responsive behaviors. Nurses noted the importance of a monthly meeting with members of a behavioral specialty team with a nurse leader to strategize about addressing responsive behaviors in residents.
Although some participants believed the educational preparation was sufficient, others indicated that it would have been helpful to have more education at the commencement of the program as well as more ongoing education.
Importance of Collaboration
Nurses and other staff emphasized the importance of working collaboratively with each other, as well as with families to provide effective care. Collaboration with team members included sharing ideas and modeling. For instance, a non-nursing professional spoke about the significance of learning from HCAs:
So, everyone's ideas together will work better than only my ideas. They [HCAs] are with the residents most of the time, so they know the residents better than me. Like, I'm there, but still they are doing care for the residents, so they know better. So, I always respect their ideas and they share their ideas, too.
Sharing of ideas among members of the multidisciplinary team also occurred through a communication binder; this system of progress notes regarding what residents were doing in their recreational therapy helped nursing staff know the work that was being done with residents, effective approaches, and progress made. This binder was used to pass on information and to ensure consistency in care. The binder helped evening/night staff know what activities they could do with residents. As noted by one participant:
When I go through that [recreation therapy binder], for instance, if I saw “She enjoyed...wheeling outside the unit today” and then she's getting aggressive, it's better to put her in a wheelchair and take her out, wheeling outside the unit. So, it helps me to know what works better for that resident.
In addition to the binder, modeling was another way to collaborate as a team to enhance learning. One participant addressed how to manage responsive behaviors of residents with staff. Having previously taken a course on behavioral issues in clients, she was able to coach staff and model techniques for staff to manage responsive behaviors. Modeling and teaching also occurred across disciplinary boundaries. Staff alerted each other when a resident's agitation was growing or when a particular response was not helpful.
Participants also described the importance of collaborating with family members. Family members were viewed as valuable sources of information about residents' personal habits and responsive behaviors and when assessing a resident who was unable to communicate verbally. As noted by one participant, family members need to be asked about their expectations of the program to facilitate the relationship between family and the multidisciplinary team.
How Individuals With Developmental Disabilities Communicate
When individuals with developmental disabilities do not formulate words, they communicate in other ways. This learning was mentioned by a number of participants: “…so, she's got her own language. ‘I'm hungry.’ ‘I'm thirsty.’...‘I'm tired.’ Or, ‘You're ignoring me, so I will get you to pay attention.’”
Staff members learned that responsive behaviors (e.g., verbal or physical aggression) are attempts to communicate. As noted by one participant, “There's always a meaning behind the behavior, so it's trying to figure out what that meaning is.” Staff members also recognized how to interpret communication between residents. As one participant delicately remarked, “Not all of them always get along.” Referring to instances of verbal aggression between residents, one participant stated:
So, what I do is, I know that two residents…I just take the passive resident out from the situation, which makes the acting resident cool down…. They'll get triggered if they see something, or they'll get triggered with some other residents' actions…
Older Adults With Down Syndrome and Dementia Differ From Older Adults With Dementia
Participants were clear that individuals aging with DS and dementia presented differently than individuals with dementia only. One participant stated that when providing care for individuals with DS and dementia, “You have to deal with them in the moment,” in contrast to individuals with dementia only where the nurse can “go back with them to a different time.” Other participants spoke about how severe responsive behaviors can be for individuals with DS and dementia and that “it's really hard to predict how they will react.” In contrast, two participants mentioned that despite the unpredictability of behaviors, these residents are loving and affectionate.
Another difference noted by several participants was the physical challenges experienced by individuals with DS. One participant emphasized the need to educate casual staff from the facility about aging individuals with DS through questions such as: “What is the unique thing, just about Down syndrome? Why do they look the way they do? Why do they have issues sleeping at night? Why do we worry about osteoarthritis?” Other participants talked about dysphagia occurring much earlier in individuals with DS and dementia than older adults with dementia only, resulting in some residents in the program receiving special diets. Further, the importance of monitoring the weights of individuals with DS to prevent obesity, as well as being aware of issues related to poor dentition, were addressed.
Another difference in caring for individuals with DS and dementia compared to adults with dementia involves the importance of recreation. Several participants addressed the significance of recreation for individuals with DS and dementia. Environmental accommodations were made, such as a common area where Recreation Therapy could conduct group activities, as well as single occupancy rooms, enabling residents to play alone. The value of recreation was indicated by leaders (e.g., nurses, recreational therapists) teaching HCAs how to play with residents in their rooms. Recreation was viewed as vital, not simply enhancing the quality of life for residents, but also for preventing agitation.
Residents' Impact on Staff
Nurses and other professionals noted how residents had taught them to look at life differently. These lessons impacted how participants perceived residents, as well as their perspective on their own lives, as one participant stated:
They've really taught me the value of enjoying the moments you have…. So, just the joy in living life to the best of your ability; you don't have to be the smartest, the fastest, the richest, right, but being happy.
Discussion and Implications for Nurses
The current study revealed several important implications for nurses working with aging adults with DS and dementia. These implications included the necessity of education for nurses and other members of the multidisciplinary team and the importance of collaborating with family members.
Education for Nurses and the Multidisciplinary Team
Education for all staff within a program for individuals with DS and dementia is necessary upon commencement of their work in the program, as well as on an ongoing basis. Education should include how dementia impacts individuals with DS differently than those without DS. Not only does dementia occur earlier for individuals with DS than for individuals in the general population (Moriconi, Schlamb, & Harrison, 2015), but those affected may experience frontal lobe symptoms of dementia earlier than older adults with dementia without DS (e.g., emotional and behavioral problems, loss of previous skills) (Deb, Hare, & Prior, 2007). This finding corresponds with participants' description of how the behaviors of individuals with DS and dementia differ from behaviors of adults with dementia only.
Individuals with DS and dementia are at risk for various chronic health problems, such as hypothyroidism, osteoarthritis, osteoporosis, gastrointestinal disorders, dysphagia, sleep apnea, and hearing loss (Barnes, 2010; Moriconi et al., 2015; National Down Syndrome Society [NDSS], 2013). When noticing changes in cognition, behaviors, or functionality of residents, a consult with a physician or nurse practitioner about possible triggers for the changes is vital. Possible triggers for changes may include hypothyroidism, delirium, urinary tract infections, medication interactions, and grief (Moriconi et al., 2015; NDSS, 2013) (Table 2).
Resources for Working with Individuals with Down Syndrome and Dementia
Importance of Consulting With Family
Family members who have provided care for decades know residents much better than nurses and other staff. They are experts in understanding behaviors of their loved one, as well as changes in behaviors. As such, they need to be considered and consulted when providing care. Despite their knowledge of their loved one, family members may be confused by the changes in their relative and may need teaching on how dementia impacts cognition (e.g., behavior modification may no longer work because of memory loss) (NDSS, 2013).
Limitations and Future Research
The current study is limited by its small sample and program size. As the program is relatively new, further research could examine and determine the learning needs of staff working with aging adults with DS and dementia.
Aging adults with DS and dementia are an emerging sub-population of older adults. As such, issues have arisen, such as where they will live when they can no longer reside in the family home and concern about the effectiveness of care provided to them by staff within facilities. The learnings of staff in a developmental disability program about the effectiveness of education received, the importance of learning from each other, and the differences in providing care for individuals with DS and dementia, as opposed to individuals without DS, were described. These learnings may begin to address a gap in the research of the skills and knowledge needed by staff to work effectively with these older adults.
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Questions for Semi-Structured Interviews
|1. How long have you worked in this program? In what capacity?|
|2. What preparation did you receive at the beginning of your work in this program? What kind of training; by who; for how long? What information was helpful/not helpful?|
|3. In what ways did the training include how to deal with responsive behaviors?|
|4. What have you learned through working with this group of people? Is the unit's physical layout adequate for these residents?|
|5. What are the benefits of working with this population of older adults? What are the challenges of working with this group?|
|6. What do you foresee as future learning needs if you continue to work with this sub-population?|
Resources for Working with Individuals with Down Syndrome and Dementia
|National Down Syndrome Society||https://www.ndss.org|
|Canadian Down Syndrome Society||http://cdss.ca|