Originally published in AJDC August September 2018 Vol 7 No 4
Mark Aros describes what happened when the doors to the dementia-specific unit at Goodhew Gardens were unlocked and argues that aged care organisations must move towards a more respectful and humane approach to providing residential care for people living with dementia
With the increasing need and demand for high-quality, safe and appropriate residential care for people living with dementia, the team at Anglicare Goodhew Gardens, in Sydney’s Taren Point, set out to challenge the well-established models of care that place secure dementia-specific units (DSUs) at the centre of care for people living with dementia in residential aged care homes.
It is time to challenge the assumption that it is necessary and respectful to keep people with dementia in a locked environment. Recommendations about locked dementia-specific environments were developed at a time when the profile of aged care residents was different to that of today. Today’s residents are older, frailer and less mobile than even five years ago. This should be a trigger for the sector to reconsider the need to keep people living with dementia ‘locked in’.
The very act of denying personal liberty by keeping someone in a confined space should be challenged. While the sector adopts the approach that the need for freedom of movement should be balanced with the need for safety, most homes interpret this by providing a secure unit within the confines of a larger facility. This approach denies people with dementia freedom of movement to access their whole home environment. Goodhew Gardens’ initiative of unlocking the DSU challenges this assumption.
This article outlines the processes that led to the ‘unlocking’ of the DSU at Goodhew Gardens, the effect of this change on the lives of the residents, and the challenge faced by the industry to move towards a more respectful and humane approach to providing residential care for people living with dementia.
The role of the DSU
Dementia-specific units are standard practice within aged care. One of the primary purposes of the DSU is to ‘manage’ and restrict mobile residents at risk of leaving the home and getting lost. They are generally considered to be the ‘safest’ environment for people living with dementia. The DSU also offers a contained space to develop a ‘dementia enabling environment’ with all the requirements that aim to provide a reassuring and comfortable homelike environment to reduce confusion and frustration.
When Goodhew Gardens was purpose-built in 2007 the DSU was designed within the framework of best-practice principles of environmental design for people living with dementia. The DSU contained four communities (or wings) each accommodating 17 residents in individual rooms, within the larger home. Each wing was self-contained and furnished in a homelike style that enabled small groups of residents to meet for meals and social activities. The wings were secure, while still allowing areas for walking internally and in external courtyards.
For a period of time this design went unquestioned. In subsequent years however, there have been two significant shifts that have led the management team of Goodhew Gardens to question the ethics of the locked environment. These are:
- the changed profile of the ‘average’ person in residential aged care, and
- a focus on person-centred care.
Legislative amendments have changed the aged care industry significantly in recent years. The profile of the ‘average’ person now entering what was once called a ‘low care facility’ is considerably different to the average person entering residential care just five years ago. A person entering Goodhew Gardens for residential care now is older, frailer, has greater care needs, and has a shorter length of stay than in previous years. The Goodhew Gardens experience is not unique; it reflects a government strategy that encourages people to remain in their own homes for as long as possible, and delay or avert entry into residential care altogether.
The risk of people with dementia leaving the home and losing their way is significantly decreased as a result of their frailty and reduced mobility.
The risk of people with dementia leaving the home and losing their way is significantly decreased as a result of their frailty and reduced mobility. Despite this change there had been no reflection by our management team, the Government or the aged and health care sector on whether a restricted environment remained necessary or relevant to prevent people leaving the home, nor any reflection on whether this restriction was unnecessarily dishonouring personhood.
Our observations and data analysis showed us that our two secure dementia environments only existed because we had not questioned the efficacy of the unit, and we had not challenged the orthodoxy that secure dementia-specific units still had a place in the current operating environment.
The shift towards person-centred approaches at Goodhew Gardens has led to the inclusion of meaningful activities which are individually tailored to engage each resident. By increasing the focus on meaningful engagement we sought to improve the quality of life for people living with dementia and to decrease incidents of unsafe walking and responsive behaviours.
We hypothesised that the combined effect of providing meaningful activities and a less restrictive environment would reduce responsive behaviours and enhance the quality of life for residents with dementia.
A two-staged approach
The initiative evolved in two stages. The first involved implementing an ‘Engagement Shift’ based on the principles of meaningful activity and Montessori*. The second stage related to the environmental design of the DSU. In stage two, staff members were challenged to question the fundamentals of providing a secure environment, and to reflect on whether these fundamentals truly respect the liberty and personhood of residents living with dementia.
Stage 1: The Engagement Shift
The development of the Engagement Shift followed a four-stage process: design, pilot, review and implementation. The program was designed based on principles of meaningful activity (Gitlin et al 2009), person-centred care (Mitchell & Agnelli 2015; Kitwood 1997) and Montessori. Initially the shift was named the ‘behaviour shift’ and care staff-to-resident ratios were increased over the afternoon period. Through the pilot and review stages it became clear that this approach was not fully meeting our objective of engaging residents in meaningful ways. Many staff members were still focusing on care tasks rather than engagement.
As a result, the shift was renamed the ‘Engagement Shift’ and ownership of the program was given to the Lifestyle Team. This team consists of staff with a minimum Certificate IV in Leisure and Health. Renaming the shift represented a significant development in the staff’s understanding that targeted engagement, rather than increased care ratios, is important to prevent the escalation of anxiety in people living with dementia.
In response to literature advocating an individualised approach it was agreed there needed to be flexibility to include a range of approaches and techniques to meet individual needs. The Lifestyle Team, together with the Clinical Leader, Nurse Educator and Dementia Clinical Nurse Consultant then designed the individualised approach we would implement.
There was a commitment to understanding the triggers for each person’s frustration and what they were communicating through their ‘behaviour’. In addition to ensuring physiological needs such as pain, hunger and medication management were met, it was also vital to use each resident’s personal history and activity preference to identify specifically targeted activities. This follows Kitwood’s principle of person-centred care that “a person’s life story should be built into all interactions in the care setting” (Kitwood 1997).
Along with the Lifestyle Team, family members and residents were key to completing the Lifestyle Overview, which included:
- Life Story: records each individual’s unique story including past, present and future interests and relationships.
- Lifestyle Assessment: identifies key meaningful activities based on Montessori Principles for Dementia.
- Key to Me: highlights key points about the individual.
The Lifestyle Team was included in clinical handover meetings to ensure information about each person’s engagement needs was discussed with care staff.
Stage 2: Unlocking the DSU
“It is widely recognised that a building and an environment can have a significant effect on a person with dementia. It can support them or it can hasten their deterioration” (NSW Government, Family and Community Services, Ageing Disability and Home Care 2011).
When the built environment at Goodhew Gardens was assessed against principles of design for people with dementia (Dementia Enabling Environments 2017) it met many of the requirements including:
- Small in size so as not to be overwhelming.
- Reduced number of people – there were a maximum of 17 people in each community within the DSU.
- Domestic furnishings – each community within the DSU was homelike and included small lounge and dining areas.
- Blend of privacy/individual spaces and small group spaces.
- Guided pathways and unobtrusive security to balance safety and security with freedom of movement within the DSU.
Despite the DSU meeting these design principles, the management team was not fully convinced that the physical environment was not contributing to the frustration experienced by many residents. The team made an executive decision to ‘open up’ the DSU in a staged process. First, corridors between each wing within the DSU were unlocked, giving residents access to the group spaces in each community.
Then the doors between the DSU and the rest of the home were opened, giving the residents entry to the lift areas and access to the entire home if they wish. This enables independent access to the café, hairdressing salon and nail artist, reception area, resident mailbox, water features, large fish tank, children’s play area and larger outdoor sitting areas.
Fundamental to the success of this initiative has been the appointment of Goodhew Gardens’ receptionist who was recruited both for her reception skills and her experience in dementia care. Her role as receptionist is to not only greet visitors to the home but to assist with meeting the needs of residents who come to the reception area. Residents are attracted to the hustle and bustle and pleasant environment of the reception foyer and it has become a place for much incidental socialisation. As it is also the exit of the home, the receptionist monitors movement within the area to ensure no one’s safety is compromised.
Staff working in the other services in the foyer, such as the hairdresser, nail artist and café staff, also monitor the wellbeing of all residents in the area.
Residents return to the DSU for breakfast and the evening meal, where they receive focused attention from staff to ensure adequate nutrition and hydration.
Una and John are among the residents whose lives have been changed by unlocking the DSU at Goodhew Gardens:
John is a gentleman who was constantly pacing within the DSU. He would rattle and shake any doors he came to and did not engage with other residents or staff. His situation was discussed at one of the care conferences. Individualised activities were designed for John, in conjunction with his family, as a means of engaging him and diverting his attention before his frustrations escalated. Exits were obstructed as much as possible and the pathway through the DSU was made clearer using lighting and colour contrast in an attempt to guide his walking.
These measures settled John to some extent, however he continued to look for and rattle doors. The effect of restricting John’s freedom of movement was undignified and dishonoured his personhood.
When the DSU was unlocked, John immediately walked into the adjacent area and went directly up to a group of male residents who were sitting at a small table, shook their hands and introduced himself. The staff who witnessed this were moved to tears.
Una mobilises slowly with a frame. She has an easy nature and is happy to walk between activities when offered, however has difficulty initiating an activity and rarely chooses to join a group activity. When the DSU was unlocked Una spontaneously raised her hands from her walking frame and said “yippee”. All Una had wanted to do was go downstairs and sit in the sun.
Now, each day Una takes herself, independently, down in the lift to the ground floor where she can sit in the sun in the entrance foyer, surrounded by activity from the nearby café and children’s play area.
The greatest gain from unlocking the DSU has been the opportunity for incidental socialising among residents. All residents now have greater access to all areas of their home. This has allowed more personal connection with other residents and with reception, maintenance and grounds staff. The Goodhew Gardens’ foyer is now alive with activity.
Staff members commented that the environment is more peaceful. Before opening the doors between the DSU and the rest of the home there was significant noise every time someone unlocked and opened or closed the door when entering and leaving the area. No one had commented on this previously, however now that it no longer occurs the staff are aware of how much more peaceful the environment is.
Impact on responsive behaviours
The incidence of residents’ responsive behaviours is measured monthly. When the data was reviewed there was a definite trend towards decreased incidents of aggression by residents each month between November 2015, when we launched the initiative, and December 2017 (see graph at right). This significant reduction has a direct and positive impact on individual residents, family members and staff.
The success of ‘unlocking the DSU’ at Goodhew Gardens should compel others in the industry to question the ethics of unnecessarily restricting access for people living with dementia.
Although Goodhew Gardens did not unlock the DSU in response to specific research, there are several research areas that support this as a way forward for providing care for people with dementia including:
• least restrictive approaches
• dignity of risk, and
• agency theory.
A person-centred approach has been described as a “restraint-free approach which preserves the human rights of any person” (Commonwealth of Australia 2012). Restraint is defined by the Department of Health and Ageing as “any aversive practice, device or action that interferes with any person’s ability to make a decision or which restricts their free movement. The application of restraint, for any reason, is an imposition of an individual’s rights and dignity”. Restraint is defined as incorporating environmental restraints such as locked doors that restrict access to certain areas. It also includes preventing a resident from leaving the building. The Department of Health and Ageing definition also encompasses psychological restraint, which “creates a belief that limits choice” (Commonwealth of Australia 2012), such as placing an item over a doorway to indicate lack of access.
The Australian Commission on Safety and Quality in Health Care (ACSQHC 2009) also defines locked doors as a form of restraint. It expands this by stating that “restraints should not be used at all for residents who can walk safely and who wander or disturb other residents. Wandering behaviour warrants…alternatives to restraint use”.
Embracing the philosophy of a person-centred approach also warrants considering the provision of ‘dignity of risk’. “Dignity of risk describes the right of all individuals to choose to take risks when engaging in life experiences” (Williams 2015). This concept recognises that restricting an individual’s choices in an attempt to limit risk is detrimental to the sense of personhood and wellbeing (Kurrle 2014). Williams makes the link between environmental restraints and ‘behaviours of excess’ being the way in which people communicate the frustration and lack of personhood experienced when a physical barrier restricts their choice of movement.
The concept that the function of ‘behaviours of excess’ may be a response to environmental restraint is expanded by Boyle (2014) in her article Recognising the agency of people with dementia. Boyle demonstrates that despite cognitive decline in people living with dementia, there remains a capacity for ‘agency’, or the “ability to influence their own personal circumstances”. Boyle comments that behaviours and emotions associated with dementia should not solely be considered symptomatic of the illness but potentially indicative of agency in response to environmental and other constraints.
Once a locked environment is considered as a ‘restraint’ it becomes evident that a secure dementia unit denies people a fundamental freedom to make choices about their movements within their own home. The aged care industry therefore has an obligation to question the use of locked environments for people living with dementia.
Challenge to the industry
All levels of the industry need to reflect on the pressures that they bring to bear on residential aged care homes to provide a ‘locked’ environment for people living with dementia. This includes the funding structure, Government regulations, and the medical sector advising families it is ‘safest’ to find a placement that includes a locked environment.
Homes need to compete for bed placement and these factors all combine to constrict the innovation that they can use to truly implement a person-centred approach. Pressures within the industry are reinforcing an inhumane principle that it is permissible, under the guise of safety, to limit personal freedom of movement and human dignity for people living with dementia.
* The Montessori method for people with dementia is adapted from principles developed by Italian educator Dr Maria Montessori in the early 1900s and focuses on supporting the person to engage in meaningful activities in a prepared environment, based on their individual needs, interests, abilities and skills. Read more about the Montessori approach in dementia care in the following AJDC articles: Using the Montessori approach in community dementia respite centres (Feb/Mar 2017); Creating a world with meaning and purpose (April/May 2017); Developing purposeful activities (Oct/Nov 2015); and The Montessori approach to dementia care (Oct/Nov 2013). To access these articles, email firstname.lastname@example.org for details.
Alzheimer’s WA (2018) Dementia enabling environments. Available at http://www.enablingenvironments.com.au/
Boyle G (2014) Recognising the agency of people with dementia. Disability and Society 29(7) 1130-1144.
Commonwealth of Australia, Department of Health and Ageing (2012) Decision-Making Tool: supporting a restraint free environment in residential aged care. Available at: https://bit.ly/2KVfogv.
Gitlin LN, Winter L, Vause Earland T, Adel Herge E, Chernett NL, Piersol CV, Burke JP (2009) The tailored activity program to reduce behavioural symptoms in individuals with dementia: feasibility, acceptability, and replication potential. The Gerontologist doi:10.1093/geront/gnp087.
Kitwood T (1997) Dementia reconsidered: the person comes first. Buckingham: Open University Press.
Kurrle S (2014) Risks and benefits: balancing care in cognitive decline. Symposium conducted at the meeting of the International Dementia Conference, Sydney, Australia. Cited in: Williams C (2015) Dignity of risk for people with dementia.
Mitchell G, Agnelli J (2015) Person-centred care for people with dementia: Kitwood reconsidered. Nursing Standard 30(7) 46-50.
NSW Government, Family and Community Services, Aging Disability and Home Care (2011) At home with dementia: a manual for people with dementia and their carers.
The Australian Commission on Safety and Quality in Health Care (2009) Preventing falls and harm from falls in older people: best practice guidelines for Australian residential aged care facilities. Commonwealth Government of Australia.
WilliamsC (2015) Dignity of risk for people with dementia. Available at: https://bit.ly/2L1drfi. (Accessed 16/05/2018).