THE WINSTON CHURCHILL MEMORIAL TRUST OF AUSTRALIA Report by Anthea Vreugdenhil 2005 Churchill Fellow To investigate the development and delivery of physical exercise programs for people with senile dementia I understand that the Churchill Trust may publish this Report, either in hard copy or on the internet or both, and consent to such publication. I indemnify the Churchill Trust against any loss, costs or damages it may suffer arising out of any claim or proceedings made against the Trust in respect of or arising out of the publication of any Report submitted to the Trust and which the Trust places on a website for access over the internet. I also warrant that my Final Report is original and does not infringe the copyright of any person, or contain anything which is, or the incorporation of which into the Final Report is, actionable for defamation, a breach of any privacy law or obligation, breach of confidence, contempt of court, passing-off or contravention of any other private right or of any law. Signed Dated
INDEX Page INTRODUCTION 3 EXECUTIVE SUMMARY 4 FELLOWSHIP PROGRAM 5 EXERCISE AND DEMENTIA: BACKGROUND 6 PROGRAM CONTENT 7 PROGRAM DELIVERY 9 EVALUATING OUTCOMES 11 PHILOSOPHICAL ISSUES 12 CONCLUSIONS 13 RECOMMENDATIONS 13 2
INTRODUCTION The field of exercise programming for people with dementia is relatively new. The fellowship enabled me to travel to the US and Canada to visit some of the innovative exercise programs that have been developed for people with dementia. Importantly, it gave me the opportunity to talk to the people who have developed and deliver these programs to discuss not only the programs, but challenges, pitfalls and future directions. This report provides a summary of my findings and the direction we can take in Australia. Thankyou to the Churchill Trust for providing me with the opportunity to take time out from my day to day work to pursue something important to me and, I believe, to our community. The experience has not only provided the basis for some new directions in my work, but has resulted in some wonderful partnerships for future projects. A sincere thankyou to the people I visited, who were all so generous with their time and open about their work. It was wonderful to feel part of a worldwide community trying to improve the quality of life for people with dementia. Arriving in the United States a week after Hurricane Katrina and three weeks later evacuating from Houston along with nearly 3 million residents as Hurricane Rita approached added an unexpected dimension to my trip. The strength and resourcefulness of people shone through even in the most difficult situations. Thanks to my family who, despite my predictions of disaster on the home front, managed almost too well in my absence. Special thanks to my husband Roger, who has been so supportive and encouraging throughout this whole adventure. One of the exercise groups I visited in Houston, Texas (I m third from the right at the back). 3
EXECUTIVE SUMMARY Anthea Vreugdenhil 9 Balfour Street, Launceston. TAS 7250. (03) 6334 8420 anthea.vreugdenhil@dhhs.tas.gov.au Co-ordinator, Dementia Research Centre, Launceston General Hospital. The aim of the fellowship was to investigate the development and delivery of physical exercise programs for people with dementia. With around 200,000 people in Australia with dementia, estimated to increase to almost ¾ million by the year 2050, there is a pressing need for new approaches and treatments for the condition. I travelled in the United States and Canada, world leaders in this area, for 6 weeks from 3 rd September 2005 until 16 th October 2005. I visited programs in a range of settings from universities to residential care, all using different approaches to exercise programming. Some involved just the person with dementia, others involved carers, students and volunteers. All reported encouraging outcomes for participants, and there was evidence that such programs also benefit the community by reducing the need for institutional care. Highlights: The smiles and laughter as we played with coloured balls in Houston. Participating in senior fitness classes in Tucson surprisingly demanding! The innovative programs provided in day and residential care settings in Boston, improving life in the moment for people with dementia. The wonderful research at the Universities of Colorado, Arizona and Washington to further our understanding and provide evidence for practice. The Canadian Centre for Activity and Aging s emphasis on restorative care which focuses on the needs of the individual and is outcome based. Conclusions and recommendations: Exercise programs are important for people with dementia, their families and their communities. To develop and implement programs in Australia we need to: Move away from activities for people with dementia being just time-fillers. Develop programs which involve flexibility, strength and aerobic exercises. Provide individual assessment of needs and abilities to ensure programs are appropriate, targeted, safe and most importantly - fun. Address and evaluate functional outcomes in our programs that are meaningful to participants and their carers. Provide funding for these programs and ongoing research. Implementation and dissemination: I will use the experience and knowledge gained from the fellowship to pilot exercise programs for people with dementia in Launceston. Findings will be disseminated through articles submitted for publication and also through presentations to community groups and media interviews. 4
FELLOWSHIP PROGRAM 2005 3 rd 9 th September, Denver, Colorado, USA University of Colorado Health Sciences Center, Geriatric Medicine Division Assoc Prof Patricia Heyn, Postdoctoral Research Fellow Prof Robert Schwartz, Division Head Drew Hepler, Research Assistant 10 th 16 th September, Tucson Arizona, USA University of Arizona Dr Sharon Arkin, Department of Speech, Language & Hearing Sciences Prof Audrey Holland, Department of Speech, Language & Hearing Sciences Assoc Prof Scott Going, Department of Nutritional Sciences Prof Tim Lohman, Department of Physiology Canyon Ranch Spa Mary Lyon, Physiologist/Trainer Carrie Kennedy, Program Assistant Desert Southwest Fitness Gwen Hyatt, CEO Silver Sneakers program at the Tucson Fit Center Shelley Whitlatch, Center Owner/Director 17 th 21 st September, Houston, Texas, USA Harris County Public Health Dr Patricia Brill, Health Education Programs Manager Oasis Lifestyles Assisted Living Centre, Houston Dianne Starr, Activity Co-ordinator Sabrina Giomassis, Unit Manager 22 nd 30 th September, Boston Massachusetts, USA Rogerson House, Rogerson Communities Barbara Rissmann, Executive Director Hearthstone Alzheimer s Care at New Horizons, Marlborough Sean Caulfield, Director of Community Relations 1 st 7 th October, London, Ontario, Canada Canadian Centre for Activity and Aging, University of Western Ontario Jeff Boris, Community Education Co-ordinator Clara Fitzgerald, Acting Director 8 th October 14 th October, Seattle Washington, USA University of Washington, Northwest Research Group on Aging Assoc Prof Rebecca Logsdon, Research Associate Professor Assoc Prof Susan McCurry, Research Associate Professor Amy Moore, Research Study Supervisor 16 th October, return home 5
EXERCISE AND DEMENTIA: BACKGROUND Regular exercise has been demonstrated to be beneficial in the treatment of cardiovascular disease and type II diabetes, both of which have been linked to dementia. Exercise that focuses on functional fitness (such as walking) has been associated with significant reductions in the levels of dependence and disability in older adults. There is now also growing evidence that exercise may be effective in the treatment of dementia, improving cognitive and physical functioning and reducing behavioural disturbance. A review of the research on this topic concluded that, while few studies have been undertaken, there was preliminary evidence for the effectiveness of exercise treatments for people with dementia. Of course, there are exercise programs for older adults already available. In Tasmania there is Living Longer, Living Stronger, a resistance exercise program for the elderly. The Department of Human Life Sciences at the University of Tasmania is investigating the benefits of exercise for older adults, and there are senior fitness programs in many community centres. But, not only are these programs not designed to cater for the special needs of people with dementia, most actually exclude people with dementia. People with dementia often have problems learning new skills and routines and may have behavioural problems. There have also been concerns about the safety of higher intensity exercise for people with dementia. Existing programs in day centres and nursing homes involve low-intensity exercise; they focus on flexibility and are often chair based. While this is important, research suggests that this is insufficient to improve overall functioning. Moreover, many of the more general benefits of exercise are the same for people with or without dementia. Improved cardiovascular health, stronger bones and reduced risk of falls are all important benefits. However, because people with dementia are unable to access existing programs, their risk of developing other health problems is increased. The challenge then is to develop an exercise program specifically designed to accommodate the limitations of people with dementia, which has the potential for implementation in the wider community. The fellowship provided me with the opportunity to explore how others had met these challenges and to see, in action, some of the world s best programs. On each of my visits I spoke to people about: the design of their programs (the content); the ways the programs were delivered; and how they evaluated the outcomes. As well as answering these questions many issues arose that I had not even anticipated making the trip all the more rewarding. 6
PROGRAM CONTENT There were a variety of approaches to exercise programming for people with dementia. Programs incorporated one or more exercises from the following areas: Flexibility and balance training; Strength or resistance training; and Sustained aerobic exercise. Most programs involved flexibility and strength components, however the actual exercises and the level of difficulty were often dependent on the stage of dementia of the target group. Those programs targeting mild cognitive impairment were able to involve more complex exercise routines, using a variety of gym equipment. For example, the Testosterone and Exercise for Aging Men (TEAM) project at the University of Colorado involved older men with only minor memory problems and they were able to do gym circuits using machines at the University s Health Sciences Centre gym with minimal supervision. Programs involving people with more advanced dementia tended to involve simpler exercises using minimal equipment. Patricia Brill s Functional Fitness program which is in use in many residential care settings in Texas involved a set of simple exercises using aides such as soft plastic balls for improving strength and coordination. The Canadian Centre for Activity and Ageing run a successful home exercise program for frail elderly that involves a set of very simple exercises that can be performed at home, using no special equipment at all. There were some exceptions to this. The Elder Rehab Program for people with Alzheimer s disease at the University of Arizona used equipment such as weight machines, but with individual supervision by a carer or volunteer. Sharon Arkin Elder Rehab Program University of Arizona. The aerobic component was less often part of exercise programs, especially for those with more advanced dementia. As these exercises mean that you have to work up a sweat, it can be difficult to explain the benefits of doing something that feels uncomfortable to someone with limited insight and understanding. However, aerobic exercise is important for general health, metabolic function and improving blood flow to the brain. Some programs were able to incorporate aerobic activities in their programs, with the University of Washington incorporating walking into their programs and the University of Arizona using treadmills and exercise bikes, under supervision. Activities such as walking can have health benefits for the carer as well if they accompany the person with dementia on their walks. 7
Individual assessment of potential participants abilities and suitability was also an important feature of most programs. There were a number of aspects to this: It is important to screen potential participants for serious health problems that could be worsened with exercise. Questionnaires and interviews were used as well as often asking for the approval of the person s doctor. The University of Colorado, for example, uses an extensive screening process covering physical and cognitive health. In addition, more vigorous programs such as the Elder Rehab Program in Arizona, checked resting pulse rate before each session. Individual assessment also allows each person to be matched up with the program most appropriate to their needs and abilities, with their physical health and stage of dementia influencing how vigorous and complex a program they can participate in. Another consideration was whether or not they had a carer to assist them. Individual assessment is an opportunity to set goals with the person, to perhaps individualise the program, and to measure outcomes. In the Canadian frail elderly exercise program, all three were addressed in the individual assessment which was undertaken by a health worker who already knew the person. Some of the programs incorporated other kinds of exercises too: memory, problem solving, social and language. Especially for people with more advanced dementia this was important in keeping them engaged in the exercise sessions, especially if a higher level of exercising was required. Patricia Heyn, University of Colorado, used a multi-sensory approach to exercising with her Patricia Heyn leading a multisensory exercise program for people with dementia. residential care group. By using imaginative stories and having fun, residents with dementia enjoyed the group sessions and were able to participate for up to an hour. Similar strategies were also used in day care and residential settings in Houston and Boston and were very effective in keeping participants engaged in the program. The Elder Rehab Program at the University of Arizona used speech and memory tasks, such as discussing the meaning of art works and sayings, or talking about social issues in hypothetical situations, as both methods of stimulation for memory improvement as well as a means of distracting participants from the process of exercising. Exercise programming for people with dementia means that attention needs to be paid to some of the special needs of this group. Activities need to be memory 8
supportive and incorporate lots of cueing so that memory is not required. Doing the exercises with the person seems to be the most effective approach, so that the person is able to copy. Small things, like making sure that you are doing things with the same hand as them, not in mirror image, are important. Activities also need to be failure-proof ; structured so that the participant cannot do the wrong thing. Some of the programs used music to add interest, while others reported that this could be distracting for participants. Many of those leading exercise classes also felt it was important not to use equipment that was too intimidating, in both the exercise program and in assessments. For people with limited insight, being wired up to machines or put on unfamiliar equipment can be a frightening experience. Finally, safety was an issue raised on many occasions. It is particularly important in the use of exercise equipment, especially for those with more advanced dementia. Even simple equipment such as resistance bands need to be assessed for safety at one program a serious eye injury was sustained when a participant let go of one end of the stretched band. With this in mind, the Canadian group advocate the use of body weight in strength exercising, as it is relatively safe and also no-cost, important in their home-based program for the frail elderly which is currently being extended beyond Ontario to other states. PROGRAM DELIVERY Just as there were many approaches to the content of the exercise programs, there were a range of approaches to how they were delivered: Some used trained staff, others carers or volunteers. Some were provided as part of a research program while others were provided as part of the person s daily care. The physical setting varied too, from gyms, to residential facilities and day centres, to people s own homes. The most successful and sustainable programs seemed to be the most simple and the most fun, and that fitted in with people s routines and lifestyles. People with dementia and their carers often already have a busy schedule with visitors for showering, nursing, day activities, respite, meals, doctors appointments and so on. The addition of an extra activity, especially one that might involve the need to be transported, can be stressful it can be quite an effort to get some people with dementia ready for an outing of any kind, especially if they have behavioural problems. While some carers enjoyed the opportunity to get out of the house and meet with others in a similar situation, for many the preference was for home-based programs with little outside interference, or programs that fitted in with existing routines such as day centre attendance. 9
Issues of resourcing and staffing were often problems. Although research programs showed improvement for people though gym-based programs, there were seldom the resources for these to continue once the research funding had run out. However, this meant that creative approaches to program delivery have been developed. A particularly successful model seems to be the train the trainer model, where carers, volunteers or existing staff are trained in assisting the person with dementia to participate in a simple exercise program. This worked well in the home environment, residential care facilities and also in the community. Rather than have to fund expert exercise trainers, capacity was built up in the community to provide these programs. Using people already familiar to the person with dementia was an added bonus in this approach, avoiding problems that come sometimes occur when new people are involved in care. Examples included: The Elder Rehab Program in Arizona used university students and carers as volunteers in their program and they also assisted with transport where required. It is important to note that insurance cover can be an issue in the use of volunteers and needs to be addressed. The Canadian Centre for Activity and Aging s Frail Elderly Exercise Program used health care workers who were already going into people s homes to assist with bathing, medication etc., to also deliver and monitor their exercise program. They were trained by trainers who were themselves trained by Centre staff. This was a particularly successful model which is now being implemented across Canada. The Elder Rehab Program used volunteer university students and carers as exercise buddies. For people with dementia already in residential care or attending day centres, the delivery of programs was somewhat more straightforward, as participants were already on-site. Dementia care centres in Houston and Boston ran daily exercise programs as part of their wider activity program and also took residents for walks in their specially designed gardens or sometimes beyond (with sufficient staff or volunteers to supervise). Wandering and agitation is a great problem for people in these facilities, who usually have more advanced dementia, and staff reported that they felt that exercise helped relieve some of these symptoms. There was also anecdotal evidence that exercise and walking helped with sleep disturbance, another problem that often arises as dementia progresses. The availability of staff familiar to residents to run the group exercise sessions was also an important element in the success of their programs. One privately run residential facility also provided individualized fitness programs. Regular one-on-one sessions with a trained fitness trainer using Nautilus gym equipment was producing some remarkable outcomes, but would be difficult to provide in a less well-funded situation. 10
EVALUATING OUTCOMES Identifying the desired outcomes of an exercise program and measuring progress in terms of those outcomes is important on a number of levels: It allows for goal setting with participants and others involved in their care. Measuring progress towards goals can provide encouragement for participants, their carers and program providers and can be part of an ongoing process of reviewing those goals. Measuring outcomes is important at the agency level, to ensure that the program providers are meeting their targets. Outcome evaluation can form part of an ongoing process of program review and adaptation. Outcome based programs will become even more important as funding bodies increasingly require evidence of the benefits achieved with their money before any further funding is considered. Outcome measures also provide important data for ongoing research. While most of the programs in residential facilities did not measure outcomes in any formal way, all of the other programs did so to some degree. The goals and outcomes varied, depending on factors such as the stage of dementia, level of functioning and home situation. Some programs focused on physical functioning, using a range of methods of assessment. Some used expensive equipment (these were usually part of a well funded research program), while others used functional fitness assessment tools that have been developed specifically for use with the elderly. Others used a subset of these assessments the timed up and go test and the six minute walk were often used. Pedometers provided a simple and inexpensive measure of overall The University of Colorado uses sophisticated equipment to measure outcomes. activity in terms of the number of steps taken in the University of Washington program. Some programs looked at other sorts of outcomes such as the frequency and severity of behavioral problems and agitation, sleep disturbance and depression levels of both participants and their carers. Carer burden was also measured using questionnaires. Cognitive outcomes such as problem solving ability and memory impairment were also important in many programs, especially those that were part of research, using a range of standardised assessment tests. Finally, programs were evaluated from the agency perspective, where data about the number of participants, costs and safety issues were recorded. Other outcomes measures that were also mentioned as important but rarely used were economic measures such as the estimated cost savings in keeping people out of residential care, or monitoring the amount of home care support required. 11
PHILOSOPHICAL ISSUES Many of the programs I visited raised wider issues about working with people with dementia; issues that impact on the development and delivery of any program designed for this group. Many of the issues also relate to our general view of the elderly and the chronically ill. One of the most important issues that was raised was that the condition of dementia does not define the person: they are still them, and they also have dementia. They still have abilities, preferences and human dignity and should be involved wherever possible in decisions that affect them. In exercise programming this means that goals are set in partnership with them where possible, and relate to outcomes that are important to them. Especially in the early stages, the person with dementia still has much to offer. At the University of Arizona, they run a volunteer program - not for people with dementia, but working with them to help them volunteer in their communities. Their work ranges from story reading in child care centres, through to packing food boxes for the needy, always working alongside another volunteer buddy. Choice is important and is something we all expect to have. In the case of exercise programs it is not a case of one size fits all. We have to recognise that people have their own preferences some will enjoy group activities whereas others prefer to work on their own or with a trusted carer or friend. Some like music while others prefer visual arts; some like to dance but others would prefer to watch. Differences need to be respected and choices offered to cater for those differences. (Of course, we all need encouragement to try new things too!) It is no longer sufficient or acceptable to think of activities for those with dementia (or other groups, especially the elderly in residential facilities) as time-fillers : activities merely there to fill the long hours in each day. Activities need to be meaningful and address outcomes and we should to be accountable for the resources that support these activities. For people with memory impairment, quality of life is not about remembering the good times, it is about having the good times. Activities that bring joy and reward in the moment are what matters. Programs reported that although participants may not have remembered what they had done in an exercise session, they had smiled a lot while doing it and were happy to do it all again the next time. The Canadian Centre for Activity and Aging advocates a restorative care approach: outcome-based programs helping people to meet functional goals that are important to them. 12
CONCLUSIONS Physical exercise is an important part of a healthy lifestyle and there is growing evidence that it is especially important for people with dementia. By slowing the progression of dementia and avoiding problems associated with inactivity, there are benefits for not only the person with dementia and their families, but to the community as well, in terms of savings related to home and institutional care. Exercise programs for people with dementia work best if they are: Based on the individual assessment of ability, problems and goals. Targeting the needs, ability levels and goals of their participants. Focused on functional fitness, incorporating flexibility, strength and aerobic elements while still being enjoyable and fun. Simple, low cost and can be implemented using existing infrastructure. Outcome based, monitoring simple and meaningful outcome measures that provide feedback for participants, program providers and funders. I will use the experience and knowledge gained from the fellowship to pilot exercise programs in Launceston for people with different stages of dementia. These will be in partnership with existing services such as day care centres and nursing homes. The pilot programs will provide models which can be used by others wanting to provide programs for people with dementia. The findings from my fellowship will be also be disseminated through articles submitted for publication and through presentations to professional and community groups. RECOMMENDATIONS To successfully develop and implement exercise programs for people with dementia in Australia we need to: Move away from activities for people with dementia being just time-fillers. Develop programs which involve flexibility, strength and aerobic exercises. Provide individual assessment of needs and abilities to ensure programs are appropriate, targeted, safe and most importantly, fun. Address and evaluate functional outcomes in our programs that are meaningful to participants and their carers. Provide funding for these programs and ongoing research. The programs to be piloted in Launceston will be a first step in developing programs based on these recommendations. As demonstration projects, they will provide evidence of the value of this approach and provide models for extension into other settings and communities. In addition we need to continue our research work, such as the program at the Dementia Research Centre in Tasmania, as this provides knowledge for the development of future programs for the prevention and treatment of dementia. 13