Facilitating ageing in place for people with dementia

1. Facilitating ageing in placefor people with dementia Presented by: Justine Alison (Alzheimer’s Aust. NQ) Research conducted by: Karen Pomfrett (LifeTec Qld.) & Bronwyn Tanner (James Cook University)

3. Background Almost 260,000 people in Australia with dementia, the majority living at home in the community. Leading cause of burden of disease for 75yrs+ & 5th highest cause of disease burden across all ages in Australia. Those living at home require assistance with health care & mobility(82%), cognition/emotion (77%), self care (63%) and communication (42%) (AIHW, 2010). Dementia is the greatest single contributor to burden of disability at older ages – 3rd & 5th leading cause of death in Australia for women and men over 65 respectively ( AIHW 2010). In 2003, there were nearly 175,000 Australians with dementia the majority of whom (57%) lived in private households in the community (AIHW, 2007). The number of people with dementia is projected to increase by 27% by 2011 and dementia was the most common primary diagnosis among all clients of the Aged Care Assessment Program in 2002 – 2003 (AIHW, 2007). Research done on the population of people living at home indicates that most require assistance in at least 1 area of personal activities. Health and mobility were activities most commonly requiring assistance ( 82%) followed by cognition and emotion ( 77%) , self care (63%) and communication (42%). Dementia is the greatest single contributor to burden of disability at older ages – 3rd & 5th leading cause of death in Australia for women and men over 65 respectively ( AIHW 2010). In 2003, there were nearly 175,000 Australians with dementia the majority of whom (57%) lived in private households in the community (AIHW, 2007). The number of people with dementia is projected to increase by 27% by 2011 and dementia was the most common primary diagnosis among all clients of the Aged Care Assessment Program in 2002 – 2003 (AIHW, 2007). Research done on the population of people living at home indicates that most require assistance in at least 1 area of personal activities. Health and mobility were activities most commonly requiring assistance ( 82%) followed by cognition and emotion ( 77%) , self care (63%) and communication (42%).

4. Supporting Ageing-in-Place Importance of home environment in supporting ageing-in-place is acknowledged Housing needs of people with dementia and their carers have received little attention (O’Malley & Croucher, 2005) Resources and information re. creating a supportive home environment exist but evidence base for recommendations is unclear The role of the environment as a major factor in enabling or disabling the achievement of both daily activities and community participation has been well established (WHO, 2001). However, it is only recently that there has been recognition of the importance of suitable housing environments for the health and well being of older persons. Within this context the housing needs and preferences of people with dementia and their carers has received scant consideration to date (O'Malley & Croucher, 2005). Information that is available in relation to residential planning shows a greater emphasis placed on the design of purpose built institutional settings than on the identification of general housing needs for community dwelling elders despite the fact that the majority of people with dementia live at home, with this number expected to increase (O’Malley & Croucher, 2005; Access Economics, 2009). While literature exists regarding interventions and designs needed to make institutional settings more familiar and home like, there is little research on the type and effectiveness of modifications undertaken to delay the move from the family home.   Initial research in environmental modification focussed on the development of specific environmental interventions to address specific behaviours (Calkins, 2001). As a result, there is an abundance of literature outlining various strategies for home modification and adaptation. There is however little evidence that exists to inform individuals, caregivers and health professionals of the effectiveness of these strategies. It has also been identified that this type of information is limited in its application as it does not address the complexities of the interrelationship between the physical environment and the care that takes place within it (Fleming, Crookes, & Sum, 2009). The role of the environment as a major factor in enabling or disabling the achievement of both daily activities and community participation has been well established (WHO, 2001). However, it is only recently that there has been recognition of the importance of suitable housing environments for the health and well being of older persons. Within this context the housing needs and preferences of people with dementia and their carers has received scant consideration to date (O'Malley & Croucher, 2005). Information that is available in relation to residential planning shows a greater emphasis placed on the design of purpose built institutional settings than on the identification of general housing needs for community dwelling elders despite the fact that the majority of people with dementia live at home, with this number expected to increase (O’Malley & Croucher, 2005; Access Economics, 2009). While literature exists regarding interventions and designs needed to make institutional settings more familiar and home like, there is little research on the type and effectiveness of modifications undertaken to delay the move from the family home.   Initial research in environmental modification focussed on the development of specific environmental interventions to address specific behaviours (Calkins, 2001). As a result, there is an abundance of literature outlining various strategies for home modification and adaptation. There is however little evidence that exists to inform individuals, caregivers and health professionals of the effectiveness of these strategies. It has also been identified that this type of information is limited in its application as it does not address the complexities of the interrelationship between the physical environment and the care that takes place within it (Fleming, Crookes, & Sum, 2009).

5. Project Aim To investigate the types and effectiveness of environmental interventions that assist in supporting a person with dementia to age-in-place. Increase understanding about the ways in which the home environment of people with dementia can be adapted to facilitate continued ageing-in-place. Ethics Approval (JCU & Alzheimer’s Australia Qld) Project commenced in 2010 and aimed to : Investigate the types and effectiveness of environmental interventions that assist in supporting a person with dementia to age-in-place. With a secondary aim to : Increase understanding about the ways in which the home environment of people with dementia can be adapted to facilitate continued ageing-in-place. Ethics approval to conduct the research was provided by the JCU Ethics Committee.Project commenced in 2010 and aimed to : Investigate the types and effectiveness of environmental interventions that assist in supporting a person with dementia to age-in-place. With a secondary aim to : Increase understanding about the ways in which the home environment of people with dementia can be adapted to facilitate continued ageing-in-place. Ethics approval to conduct the research was provided by the JCU Ethics Committee.

6. Project Plan Document Analysis Investigate what is being recommended and evidence base Provide a framework for clinician survey Survey of OT clinicians working in the area On line survey to identify current practice, recommendations, implementation and perceived effectiveness of OT services to facilitate ageing in place. Interviews with carers and people with dementia Gain their perspective of interventions to assist them to remain at home while they age. The project has 3 stages – 1st and 2nd are complete and 3rd is underway. Initially a Document analysis was undertaken to find out what was being recommended by a range of resource publications ( many on line) and also in peer reviewed articles. The evidence base for the information presented in these resources was examined and the content compared and contrasted. The document analysis included resource documents from 8 agencies from Australia, US, UK and 13 journal articles and found that while there were similarities in recommendations for alterations to the home environment, there was very little evidence cited as the basis for these recommendations. The document analysis provided the basis for the next stage – Clinician Survey – on line survey of clinicians working in the area to determine what they were recommending and what they drew on to inform their recommendations. Finally interviews were undertaken with a carers and people with mild dementia to find out what strategies they had implemented in their home to assist in maintaining the person within their home as they aged. These last 2 stages are the focus of this presentation today. The project has 3 stages – 1st and 2nd are complete and 3rd is underway. Initially a Document analysis was undertaken to find out what was being recommended by a range of resource publications ( many on line) and also in peer reviewed articles. The evidence base for the information presented in these resources was examined and the content compared and contrasted. The document analysis included resource documents from 8 agencies from Australia, US, UK and 13 journal articles and found that while there were similarities in recommendations for alterations to the home environment, there was very little evidence cited as the basis for these recommendations. The document analysis provided the basis for the next stage – Clinician Survey – on line survey of clinicians working in the area to determine what they were recommending and what they drew on to inform their recommendations. Finally interviews were undertaken with a carers and people with mild dementia to find out what strategies they had implemented in their home to assist in maintaining the person within their home as they aged. These last 2 stages are the focus of this presentation today.

7. Stage 2: Survey to practicing clinicians The scope and nature of changes recommended – clinical reasoning Training received Resources used Follow up and barriers to implementation Satisfaction with service delivery No. of participants – 32, all community based therapists 7 The information collated in the document analysis provided the framework for the survey to clinicians. The survey was on line and disseminated using OT Australia and professional networks. The survey aimed to find out: The scope and nature of changes to the home environment that OT’s working with people with dementia were recommending (changes to accommodate behaviours or design issues) level of training received, resources used what informed their recommendations ( Clincial reasoning), their ability to follow up recommendations, barriers to implementation of recommendations, level of satisfaction with their service delivery and gaps in service delivery. Majority of OT worked in the community working with older adults, fragile aged, and with HACC and DVA clients. Caseload –47 % of therapists reported less than 25% of case was made up of people with dementia while 41% reported 25 – 50% of current case load were people with dementia. Experience – 72% have at least one years experience and 30% have over 5 years experience. The information collated in the document analysis provided the framework for the survey to clinicians. The survey was on line and disseminated using OT Australia and professional networks. The survey aimed to find out: The scope and nature of changes to the home environment that OT’s working with people with dementia were recommending (changes to accommodate behaviours or design issues) level of training received, resources used what informed their recommendations ( Clincial reasoning), their ability to follow up recommendations, barriers to implementation of recommendations, level of satisfaction with their service delivery and gaps in service delivery. Majority of OT worked in the community working with older adults, fragile aged, and with HACC and DVA clients. Caseload –47 % of therapists reported less than 25% of case was made up of people with dementia while 41% reported 25 – 50% of current case load were people with dementia. Experience – 72% have at least one years experience and 30% have over 5 years experience.

8. Findings :Areas of involvement by OT Addressing behavioural concerns Safety 77% Rarely addressed other behaviours Addressing environmental concerns Access (Internal and External) – 93 % Bathroom and Toilet – 93% Bedroom – 74% Living Area – 70% 8 Therapists were asked to identify their main areas of recommendation/ intervention in facilitating ageing in place for people with dementia. These were broken into 2 main areas - recommendations related to addressing behavioural concerns and those related to specific environmental concerns. This breakdown reflected the way information/ recommendations are commonly organised in most resource material reviewed in the document analysis. 77% of respondents reported addressing behaviours related to safety but rarely addressing any other concerns. With regard to environmental concerns, the majority of therapists reported making recommendations in relation to improving access in and around the house & in bathroom & toilet with other areas such as the bedroom & living areas also included to a lesser extent. Therapists were asked to identify their main areas of recommendation/ intervention in facilitating ageing in place for people with dementia. These were broken into 2 main areas - recommendations related to addressing behavioural concerns and those related to specific environmental concerns. This breakdown reflected the way information/ recommendations are commonly organised in most resource material reviewed in the document analysis. 77% of respondents reported addressing behaviours related to safety but rarely addressing any other concerns. With regard to environmental concerns, the majority of therapists reported making recommendations in relation to improving access in and around the house & in bathroom & toilet with other areas such as the bedroom & living areas also included to a lesser extent.

9. Findings: Areas of minimal or no involvement by OT Behavioural concerns re. wandering, pacing, agitation, disorientation Sensory aspects – lighting, noise External areas – garden. Sustaining engagement in meaningful activity 9 In summary, the primary involvement of occupational t therapists when engaged in supporting people with dementia is with regarding to ensuring safety around the home through such things as installation of grab rails in the toilet & bathroom and doorways and prescription of equipment such as shower chairs, bathboards. Providing recommendations to assist in behaviours such as wandering, disorientation, pacing, agitation, perceptual difficulties, sleeping difficulties were either never or rarely addressed. Similarly modifications to address sensory aspects of the home – lighting, noise – or external areas of the home such as the garden were also rarely or never addressed. Very few therapists are engaged in making recommendations around the sustaining of meaningful activity (occupation) in the home environment. One respondent commented that this was partly due to the lack of time allocated to the visit so that only safety was able to be addressed. In summary, the primary involvement of occupational t therapists when engaged in supporting people with dementia is with regarding to ensuring safety around the home through such things as installation of grab rails in the toilet & bathroom and doorways and prescription of equipment such as shower chairs, bathboards. Providing recommendations to assist in behaviours such as wandering, disorientation, pacing, agitation, perceptual difficulties, sleeping difficulties were either never or rarely addressed. Similarly modifications to address sensory aspects of the home – lighting, noise – or external areas of the home such as the garden were also rarely or never addressed. Very few therapists are engaged in making recommendations around the sustaining of meaningful activity (occupation) in the home environment. One respondent commented that this was partly due to the lack of time allocated to the visit so that only safety was able to be addressed.

10. Findings: What informs OT practice? Past Experience 96% (implications for follow up) Carers, friends, family 87.5% Other therapists 79% & support agencies 50% 60% able to follow up, usually by: Phone calls, feedback from other agencies, client initiated, follow up visits Barriers to follow up included lack of time, lack of communication from other agencies. 10 The survey also asked OT s to report on what informed their practice in recommending changes to the home environment for people with dementia. The majority reported that past experience and those involved with the person with dementia were the primary sources of information, with other therapists and agencies involved with person also being used by the majority of respondents. OT’s were also asked about how they evaluate their interventions/ recommendations and given that past experience is where most OT”s draw their knowledge from in this area, this becomes an important point to note. Only 60% of respondents reported being able to follow up on their recommendations. This was usually via phone calls or through other agencies,. Some follow up only occurred if the person rang up . Follow up visits were occasionally undertaken. Barriers to follow up include : Lack of time compounded by lack of communication from other agencies involved particularly with major home mods; needs approval by coordinator before it can happen and this is determined by the funding package, not informed of mods being completed. The survey also asked OT s to report on what informed their practice in recommending changes to the home environment for people with dementia. The majority reported that past experience and those involved with the person with dementia were the primary sources of information, with other therapists and agencies involved with person also being used by the majority of respondents. OT’s were also asked about how they evaluate their interventions/ recommendations and given that past experience is where most OT”s draw their knowledge from in this area, this becomes an important point to note. Only 60% of respondents reported being able to follow up on their recommendations. This was usually via phone calls or through other agencies,. Some follow up only occurred if the person rang up . Follow up visits were occasionally undertaken. Barriers to follow up include : Lack of time compounded by lack of communication from other agencies involved particularly with major home mods; needs approval by coordinator before it can happen and this is determined by the funding package, not informed of mods being completed.

11. Findings: Quality of Service Delivery Comprehensive service (50%) Limited by the type of referrals received (54%) Limited by organisational restrictions (58%) Believe clients are satisfied (83%) Would like to provide a wider range of services (83%) Satisfied with the quality of the service they deliver (58%) Feel there are significant gaps (83%) 11 Respondents were also asked their opinion on the quality of the service they provided to this population. Only 50% of respondents felt they provided a comprehensive service and 83% felt there were significant gaps in the service provided to this population. From this information we can deduce that OT’s working in this area would like to see changes. Some face organizational restrictions and some are limited in their scope by the referrals they receive. While there is some variation in whether they are able to deliver a comprehensive service they feel that the clients are satisfied with what they are receiving. This perception was investigated this through the client interview phase.Respondents were also asked their opinion on the quality of the service they provided to this population. Only 50% of respondents felt they provided a comprehensive service and 83% felt there were significant gaps in the service provided to this population. From this information we can deduce that OT’s working in this area would like to see changes. Some face organizational restrictions and some are limited in their scope by the referrals they receive. While there is some variation in whether they are able to deliver a comprehensive service they feel that the clients are satisfied with what they are receiving. This perception was investigated this through the client interview phase.

12. Stage 3: Interviews with people with dementia & carers Sourced through Alzheimer’s Australia North Qld 10 participants 3 people with early dementia 7 carers of people with dementia 12 Participants for interviews were sourced through Alzheimer’s Australia North Qld - letter was sent out to all members with contact details of the researchers. A total of 10 people participated in interviews – 3 people with early dementia & 7 carers of people with dementia.Participants for interviews were sourced through Alzheimer’s Australia North Qld - letter was sent out to all members with contact details of the researchers. A total of 10 people participated in interviews – 3 people with early dementia & 7 carers of people with dementia.

13. Interview questions Changes made to the home environment Challenges of staying at home Future concerns & challenges Sources of support & information Helpful or useful strategies 13 Semi structured interviews were undertaken with all participants – some interviews included both the person with dementia and their carer. People were asked to report on what changes they had made to their homes, what challenges they faced remaining at home, future concerns or challenges they anticipated, where they had sourced support or information – what had helped what had been not so helpful . All interviews were audiotaped with permission, transcribed and coded. Categories were identified by both researchers and organised into 4 main themes. I would like to stress that the findings reported here are early interim findings.Semi structured interviews were undertaken with all participants – some interviews included both the person with dementia and their carer. People were asked to report on what changes they had made to their homes, what challenges they faced remaining at home, future concerns or challenges they anticipated, where they had sourced support or information – what had helped what had been not so helpful . All interviews were audiotaped with permission, transcribed and coded. Categories were identified by both researchers and organised into 4 main themes. I would like to stress that the findings reported here are early interim findings.

14. Findings : Facilitating staying at home Alterations to the home environment Access to bathroom & toilet most common, Access in and out of home environment Main focus was safety Strategies to address quality of home experience Individuals developed innovative & unique strategies to facilitate ongoing engagement in important & meaningful activities at home 14 The f irst theme was what people had done to facilitate remaining at home Participants reported a range of changes to the physical environment of the home to assist in making day to day activities easier. Alterations to improve access to bathroom and toilet for individuals and carers were most commonly identified. Alterations included: Installation of grab rails to toilet and shower/ bath area, Regulation of water temperature Access in and out of the home environment was the second most common area for alteration. Alterations included: Hand rails to external steps or ramps ; Installation of threshold ramps at front and rear doors to manage lips e.g. of sliding glass doors The main focus of all alterations was to improve or maintain safety of both the person with dementia and the carer. What was of note was the range of strategies that individuals had developed or implemented to facilitate the quality of the experience of the person being at home. One carer reported that her mother wanted to remain independent in accessing her garden ( she had been an avid gardener) but had trouble accessing the stairs of her house as she continually damaged her legs going down the steps. The daughter improved leg protectors using incontinence pads so that her mother could continue to independently access the garden. Another couple reported analysing what elements of the task of driving were giving the person with dementia problems. In this case it was way finding e.g. Was able to get to the shops in the car but couldn’t find the way home. They installed a GPS device which directed the person home – still maintaining their ability to iindependently go the shops. Just 2 examples of very innovative strategies that people used to facilitate the quality of the experience of being at home. The f irst theme was what people had done to facilitate remaining at home Participants reported a range of changes to the physical environment of the home to assist in making day to day activities easier. Alterations to improve access to bathroom and toilet for individuals and carers were most commonly identified. Alterations included: Installation of grab rails to toilet and shower/ bath area, Regulation of water temperature Access in and out of the home environment was the second most common area for alteration. Alterations included: Hand rails to external steps or ramps ; Installation of threshold ramps at front and rear doors to manage lips e.g. of sliding glass doors The main focus of all alterations was to improve or maintain safety of both the person with dementia and the carer. What was of note was the range of strategies that individuals had developed or implemented to facilitate the quality of the experience of the person being at home. One carer reported that her mother wanted to remain independent in accessing her garden ( she had been an avid gardener) but had trouble accessing the stairs of her house as she continually damaged her legs going down the steps. The daughter improved leg protectors using incontinence pads so that her mother could continue to independently access the garden. Another couple reported analysing what elements of the task of driving were giving the person with dementia problems. In this case it was way finding e.g. Was able to get to the shops in the car but couldn’t find the way home. They installed a GPS device which directed the person home – still maintaining their ability to iindependently go the shops. Just 2 examples of very innovative strategies that people used to facilitate the quality of the experience of being at home.

15. Findings : Challenges of staying at home Carer health & well being Onset of stress related health issues Loss of social network & supports Loss of social role & identity For person with dementia - loss of worker role, responsibilities & activities. For carer – loss of role of spouse 15 The second theme identified was the challenges of staying at home. Many carers spoke of the stress of caring and the impact of this on their health & well being. Carers reported developing stress related illnesses such as asthma, emotional burnout & fatigue as well as loss of social networks often due to lack of understanding of friends about the condition or the inability of friends to ‘handle’ the situation and changes.. People with dementia spoke about the having to give up work and the loss of that role and associated activities. Again people had developed some unique ways of coping with this. One man with dementia took up computer games that allowed him to use similar skills that he had used in the workplace (e.g. In planning complex projects). This was after a period of feeling totally berefit with the loss of his worker role. Another reported using research skills ( previously used in the work environment) to keep up to date with information and developments about dementia. Carers also reported the loss or changes to important life roles. One carer reported she was less of a wife and more of a care – giver. Another respondent spoke of her distress when, on contacting Centrelink to report that her husband was now in Residential care, she was told that her status was now ‘single’, even though she was still married. The second theme identified was the challenges of staying at home. Many carers spoke of the stress of caring and the impact of this on their health & well being. Carers reported developing stress related illnesses such as asthma, emotional burnout & fatigue as well as loss of social networks often due to lack of understanding of friends about the condition or the inability of friends to ‘handle’ the situation and changes.. People with dementia spoke about the having to give up work and the loss of that role and associated activities. Again people had developed some unique ways of coping with this. One man with dementia took up computer games that allowed him to use similar skills that he had used in the workplace (e.g. In planning complex projects). This was after a period of feeling totally berefit with the loss of his worker role. Another reported using research skills ( previously used in the work environment) to keep up to date with information and developments about dementia. Carers also reported the loss or changes to important life roles. One carer reported she was less of a wife and more of a care – giver. Another respondent spoke of her distress when, on contacting Centrelink to report that her husband was now in Residential care, she was told that her status was now ‘single’, even though she was still married.

16. Findings : Issues with services & health professionals Sources of support & information Support groups very valuable Input from health professions & services OT & PT generally positively received but minimal input - long wait times, poor referral system. Repetition of information & assessments Lack of continuity of support workers Major concerns with acute settings – a different environment 16 The final theme to come out of the interviews relates to issues people identified with services and health professionals. These issues impacted on the previous 2 themes of facilitating staying and home and challenge of staying at home, but warranted a separate theme. Starting with the positive, support groups – such as AA NQ were identified as very valuable sources of information about dementia generally and as a way to ‘connect’ with others facing similar situations. Individuals also reported the support group as a way of findings out about other services. Input from health professionals were also generally positively received, but many people reported doing things themselves because of the wait times to see the OT or PT. One respondent said that the hospital was to organise a visit he OT but no one ever turned up. Regarding OT input, this ties in with what OT’s reported in the survey– main intervention involved bathroom assessment. Another issues identified was the fact that for each new service that came through the door, the same information had to be provided , the same questions asked and the same assessments done over and over again. Lack of information sharing between organisations resulted in a lot of frustration. The inability of some services to ensure that the same staff came each week to provide in home support was also a concern. One family reported finally hiring their own staff because of this issue ( at their own cost). Another major area of concern was the way people with dementia were treated/ managed in acute settings – stories from carers appear to reflect a poor understanding of the needs of some with dementia and families reported what could be described as a level of neglect of their family member when in an acute setting. The final theme to come out of the interviews relates to issues people identified with services and health professionals. These issues impacted on the previous 2 themes of facilitating staying and home and challenge of staying at home, but warranted a separate theme. Starting with the positive, support groups – such as AA NQ were identified as very valuable sources of information about dementia generally and as a way to ‘connect’ with others facing similar situations. Individuals also reported the support group as a way of findings out about other services. Input from health professionals were also generally positively received, but many people reported doing things themselves because of the wait times to see the OT or PT. One respondent said that the hospital was to organise a visit he OT but no one ever turned up. Regarding OT input, this ties in with what OT’s reported in the survey– main intervention involved bathroom assessment. Another issues identified was the fact that for each new service that came through the door, the same information had to be provided , the same questions asked and the same assessments done over and over again. Lack of information sharing between organisations resulted in a lot of frustration. The inability of some services to ensure that the same staff came each week to provide in home support was also a concern. One family reported finally hiring their own staff because of this issue ( at their own cost). Another major area of concern was the way people with dementia were treated/ managed in acute settings – stories from carers appear to reflect a poor understanding of the needs of some with dementia and families reported what could be described as a level of neglect of their family member when in an acute setting.

17. In Summary Carers & people with dementia develop innovative & unique ways of facilitating ageing in place Support groups provide valuable source of support & information Room for improvement re. service provision to people with dementia to facilitate ageing in place Scope for increased & improved OT service provision particularly with regard to strategies to facilitate quality of experience of staying at home 17

18. Resource Sites Living with Dementia www.bcs.org.au   Alzheimers Australia www.alzheimers.org.au At Home with Dementia - NSW Department of Ageing, Disability and Home Care www.dadhc.nsw.gov.au Adapting your Home to Living with Dementia (Canada Mortgage & Housing Corp.) www.cmhc.ca The Dementia Services Development Centre (Uni of Stirling) www.dementia.stir.ac.uk   Canadian Psychological Ass www.cpa.ca Fall Prevention Centre of Excellence www.homemods.org Innovative Designs in Environments for an Aging Society (IDEAS) www.ideasconsultinginc.com 18

19. References AIHW (2010) Australia’s Health: 2010. Canberra: Australian Institute of Health and Welfare. O'Malley, L., & Croucher, K. (2005). Housing and Dementia care - a scoping review of the literature. Health and Social Care in the Community, 13(6), 570 - 577. Bakker, R. (2003). Sensory loss, dementia and environments. Generations, 27(1), 46-51. Brawley, E. C. (2002) Bathing environments: How to improve the bathing experience. Alzheimer;s Care Quarterly, 3(1), 38-41. Cash, M. (2004). At home with AT: An evaluation of the practical and ethical implication of assistive technology and devices to support people with dementia and their carers. Retrieved 30 March 2005 from www.dementia-voice,org,uk/Projects/At_Home_with_AT_main.pdf Calkins, M. P., & Namazi, K. H. (1991). Caregiver perceptions of the effectiveness of home modifications for community living adults with dementia. Journal of Alzheimer’s care and Related Disorders Research, 6(1), p.25-29. 19

20. References Charness, N., & Holley, P. (2001). Human factors and environmental support in Alzheimer’s disease. Aging and Mental Health, 5 (Supplement1), S65-S73. Gitlin, L.N., Corcoran, M., Winter, L., Boyce, A., & Hauck, W.W. (2001). A randomized controlled trial of a home environmental intervention: Effect on efficacy and upset in caregivers and on daily function of persons with dementia. The Gerontologist, 41(1), 4 – 14. Gitlin, L. N., Hauck, W. W., Dennis, M. P., & Winter, L. (2005). Maintenance of Effects of the Home Environmental Skill-Builidng Program for Family Caregivers and Individuals with Alzheimer's Disease and Related Disorders. The Journals of Gerontology, 60A(3), 368-374. Gitlin, L. N., Liebman, J., & Winter, L. (2003). Are Environmental Interventions Effective in the Management of Alzheimer's Disease and Related Disorders? A Synthesis of the Evidence. Alzheimer's Care Quarterly, 4(2), 85-107. Gitlin, L. N., Schinfield, S., Winter, L., Corcoran, M., Boyce, A. A., & Hauck, W. (2002). Evaluating home environments of persons with dementia: Interrater reliability and validity of the home environment assessment protocol (HEAP). Disability & Rehabilitation, 24(1-3), 59-71. 20

21. References Hurley, A. C., Gauthier, M. A., Horvath, K. J., Harvey, R., et al. (2004). Promoting safer home environments for persons with Alzheimer’s disease: The home safety/injury model. Journal of gerontological nursing, 30(6), 43-51. Nolan, B. A. D., Mathews, M. R., Truesdell-Todd, G., & VanDorp, A. (2002). Evaluation of the effect of orientation cues on wayfinding in persons with dementia. Alzheimer’s care Quarterly, 3(1), 46-49. Steinfeld, E. (2002). My father’s room. Alzheimer’s Care Quarterly, 3(1), 1-6. Price, J. D., Hermans, D., & Grimley Evans, J. (2005). Subjective barriers to prevent wandering of cognitively impaired people. Cochrane Database of Systematic Reviews, (4), 15. tal Health, 5(Supplement1), S65-S73. Sheldon, M.M., & Teaford, M.H. (2002) Caregivers of people with Alzheimer’s dementia: An analysis of their compliance with recommended home modifications. Alzheimer’s Care Quarterly, 3(1), 78-84. 21

22. Contact Details Karen Pomfrett karenpomfrett@lifetec.org.au Bronwyn Tanner Bronwyn.tanner@jcu.edu.au With thanks to those who participated in this project 22