The onset of symptoms of dementia among individuals with ID is a particular challenge for day programmes. No area of ID services better exemplifies a traditional programmatic emphasis on being in the community, controlling one’s life, building a network of relationships, holding a job or going to a programme outside the home, and having more independence this year than one did last year. There is also research being reported that as many as 66% of person with ID experiencing dementia symptoms are unlikely to be in a day programme (see, for example, McCarron 2002). If consistent across providers, this is of great concern: at the very time when programming support needs are greatest, the philosophy and practices of day programmes are at odds with dementia needs, and discharges from day programmes will mean that programming resources will be at their lowest.
Dementia is a degenerative progressive disease, where the person’s needs should be expected to increase and skill levels to decline. This does not mean, however, that all skills and interests are lost immediately or that persons with dementia will not benefit from programming and other stimulation (McCallion 1999). Needs of individuals will also always vary and the journey through the stages of dementia while similar has its own unique aspects, further compounding the difficulties in providing appropriate day programmes. There are a series of challenges that must be addressed if day programming is still to be an option as dementia progresses. These include:
- Knowing the mix of services needed by each person with dementia and how they will change over time.
- Determining the best location to offer services among existing day programme sites, areas in the residential unit, quiet areas and therapy rooms.
- Being clear about what we are trying to achieve with the services we provide.
- Developing services that are sustainable as dementia progresses and greater numbers of persons with ID served by the programme experience symptoms of dementia.
- Developing dementia specific day programmes.
- No longer focusing upon teaching new skills and instead working to maintain existing skills and to find adaptations that continue enjoyment of activities despite loss of skills.
- Developing memory appropriate versus age appropriate activities.
- Providing opportunities for engagement and enjoyment rather than requiring active involvement.
- Balancing the needs and desires of different clients.
- Knowing what staff are able to do and what is reasonable, given timeframes and other constraints.
The challenge now is to understand what will work and to redesign day programmes accordingly. Addressing this challenge will require administrative support of a change in programming philosophy, redesign of the physical layout of day programme sites, staff reorientation and training, and a new programming model.
Interviews with day programme administrators at six sites in New York State found assumptions that the purpose of programming was to support production, productivity and the acquisition of new skills and beliefs and that staff were available to offer support, but were not trained or expected to be actively involved in personal care. They also reported that they did not have the right staffing levels, type of staff (particularly to support health needs) or physical facilities to offer a safe and supportive environment for individuals with dementia. They were not convinced that funders and regulators understood the issues, would provide the resources needed or would support continued participation in day programmes by persons with dementia. Similar concerns were raised by staff at the day programmes, even by those interested in maintaining the day programme attendance of persons with dementia. However, there was a willingness to explore alternatives.
Key interventions were to develop an understanding of the importance of skill maintenance and continued community participation, to identify training needs and offer training in dementia issues for administrators and staff, to expand relationships with health service providers in the community to further support continued programme attendance, to undertake low-cost environmental modifications that promoted safety and supported small rather than large group programming, and to work with dementia service providers in the community on the dementia-oriented redesign of day-to-day programming. The most critical outcome was changes in both written policies and in the day-to-day programme philosophy to support continued participation in day programming by persons with ID and dementia.
Meeting environmental needs
Work with the six-day programmrs in two areas of New York State, supported by a grant from the US Administration on Aging, found that key areas for environmental modification were:
- Providing small group and one-on-one spaces, often by putting up dividers and walls and dropped ceilings where there were previously workshop-like areas and other large open spaces.
- Addressing dementia-appropriate lighting (reducing shadows), noise abatement, flooring (reducing glare/avoiding patterns) and way-finding cues.
- Creating a more accessible site with adaptive toilets and an adequate bathroom area (to enable staff to cope with toileting accidents rather than requiring discharge of persons with continence issues).
- Offering space to wander safely inside and out the day programme, including sitting areas.
- Redesigning programme areas to provide some combination of gardens/kitchen/snoezelen area/memory room/pottery kiln/beauty salon.
These changes were found to create a safe place, but not at the expense of supporting continued independence. With donated materials, re-allocations of resources and staff effort average additional cost of renovations was $7,000-
Staff Re-Orientation and Training
Key training issues in the six sites were improving staff understanding of the implications and progression of dementia, including strategies for identifying and supporting the person’s remaining strengths; training in dementia-based activity delivery, re-orienting staff to find ways to support and maintain individuals, rather than focus on the documenting of reasons for discharge; developing menus of services and activities to be offered, rather than delivering largely the same programme to everyone and team approaches to personal care and health and safety concerns.
A New Programming Model
Drawing upon the literature on successful programming approaches for persons with dementia and an understanding of the impact on individuals of the progression of dementia (McCallion 1999), a programming approach was developed and implemented in the six sites that was:
- Multisensory in approach—offering activities and opportunities that may be at times stimulating and at other times calming,
- Supportive of existing skills and memories rather than teaching new things,
- Tailored to the likes/dislikes and previous experiences of the clients,
- Based upon offering activities rather than training and that utilised reminiscence, trips in the community, walks, simple exercise, massage, snoezelen, horticulture, pottery, art, music, aromatherapy, hair/make-up/personal grooming, and quiet times and spaces
- Underpinned by training in dementia issues for staff.
Findings and Conclusions.
Administrators and staff in interviews across the 12-month time period of the study consistently reported that the changes resulted in a more calm, comfortable, and relaxed care environment in which staff believed they were more effective, and clients more engaged (McCallion and Nickle 2005). Indeed, discharges of persons with dementia from the day programmes were reduced during the study period. Of 19 clients identified at risk of discharge at the beginning of the project, only four moved during the 12 months and these discharges were attributable to residential movement—either out of the catchment area of the day programming or to a residential setting where day programming was included onsite. The success in programme maintenance was largely attributed to the impact of the environmental modifications, the reorganised staffing, and the extensive dementia training staff received. Administrators also perceived that there was enhanced agency awareness and professionalism regarding ID, aging, and dementia (McCallion and Nickle 2005).
The findings here may be a model for other day programme providers and more detailed information on the environmental modifications, staff training and programming redesign are available (McCallion and Nickle 2005).