By Kate Swaffer
Kate Swaffer explains what people with dementia want from residential care, based on her own experience living with younger onset dementia, as a past care partner advocating for and supporting three people with dementia in residential care, and from feedback she’s gathered during focus groups and interviews with people with dementia around Australia.
The number of Australians in the over 65 age demographic is rising, and as the population continues to age, more and more older Australians and people with dementia will require some sort of care, whether it’s a care partner, community care, respite or a residential aged-care facility.
What consumers want
From the focus groups with people with dementia, and online interviews with hundreds of other individuals with dementia and care partners, this is what consumers say they want in residential care:
- Exercise, lifestyle and diet, all important to quality of life and well-being.
- Supports and strategies for disabilities to enable independence
- Lots of space – inside and outside
- Own keys or access to an outside area, even if the front door is locked
- Recreational areas for walking, birds, natural environments
- Creative environment
- Meals when they want them, and food that is edible
- Flexible routines
- Absence of apparent barriers / walls
- A screen for audio-visual content (for communal get-togethers)
- Open access to the outside world (even if chaperoned)
- Outside community coming in
- Family able to stay overnight (privacy)
- Personalised furnishings (everybody wants their own style)
- Lesbian, gay, bisexual, transgender and intersex (LGBTI) friends to stay
- Resident autonomy and power with their ideas and suggestions taken seriously
- Use of technology
- Access to walking groups, dancing classes, normal exercise, gyms, social recreational sport (eg, fishing, bowls etc in the community)
- Onsite rehabilitation and gymnasium, with sports physiologists or physiotherapists to assist.
Using dementia enabling design
One very important point that must be considered is whether a facility has been built or renovated using the Dementia Enabling Environment Principles (Fleming 2011), as this is becoming a human rights issue for residents in aged and dementia care. Easy access to the outside, not feeling locked in, the ability to engage in everyday lifestyle activities like helping with the washing or cooking, and today, smaller home-style accommodation is becoming not only desirable but is now being provided by a few organisations in the sector and will be demanded in the future. Institutional living is no longer seen as a suitable way to provide the last home a person will ever reside in, at least not from the consumer’s perspective.
It would seem reasonable to assume that the architects, builders and interior designers who build residential aged-care facilities are working to the financial and design specifications of the owners who are funding the building. Such facilities were originally designed in a style similar to hospitals, to support the medical model of care. This meant they have historically been built in an institutional style and layout with rooms leading out to long (often confusing) corridors, with central eating areas, and not always with gardens or access to the outdoors.
The old institutionalised model is still being used in most residential aged-care facilities today, and it does not address the emotional, psychosocial, family and relationship, or recreational needs of most residents. It is based on medical issues such as medication requirements, falls risks and nutritional needs, and then monitoring things such as weight loss and falls, not on quality of life from the perspective of those people living there.
Respecting our rights
It is our human right to feel included, to have freedom, to have real support to live with our disabilities, and for the provision of dementia enabling environments, in the same way as wheelchair ramps are provided. Dementia enabling design is not necessarily costly or difficult to provide, and I hope in Australia we soon legislate it to ensure residential aged-care facility owners and designers do the right thing.
When dementia enabling design is used, the cost of care is often cheaper. For example, if residents feel like it is their home, if they feel like they have freedom and autonomy, then the likelihood of behavioural and psychological symptoms of dementia, and therefore the use of costly medication or additional staff or support services, will be reduced.
Facilities that look like they are from the pages of a glossy home design magazine do not necessarily provide optimal care. Optimal care should be measured on how a person feels when they are living there, and poor care, under-trained staff and poor design may be key contributors to the currently documented incidence of behavioural and psychological symptoms being experienced by up to 90 per cent of people with dementia in residential care.
Creating a home
While the notion of ‘keeping us safe’ is important, the feeling of being locked in, locked away, forgotten, ignored and living in an institution is more often the reality for residents with dementia. Including the views of people who live in these facilities in their design may be the best way to ensure they are places we will want to live in.
People with dementia living in care facilities are told it is good for them to go to the activities room and participate in the various (or most often not so varied) activities provided, at the times on the printed timetable stuck on the door in our single room with our single bed. (Yes, a single bed, although if it was really our home, we would be in a queen, king or at least a double bed.) Oh, and this room, supposedly our personal, individualised private space, cannot be locked, nor do we have a key for it, and people rarely knock to enter, they just come in when it suits them. We might be resting, or wanting to be alone, but no, when it is time to eat, or to be bathed, or go to an activity, we are disturbed, often without the courtesy of the visitor in ‘our home’ asking if it suits us. In the same way that someone would request to enter our home if we were living in the community, if we end up needing to live in a residential aged-care facility, everyone, including the staff, owners, our family and friends, should come into our small private space only as our invited guest.
Getting it right
There are a few organisations in Australia who are using the dementia enabling principles, but the one that comes to my mind first is Group Homes Australia. They have small, personalised, dementia enabling homes in the community that look and feel ‘just like home’, with access to the garden, activities in the community and with better staff ratios and training than institutional-style aged care facilities. This style of residential accommodation and care is optimal and we need to see it rolled out to all areas.
Considering consumers’ views
Many things come down to perception. If I could not get outside through any of the doors in a residential care home, I would immediately feel trapped, as if locked in jail. If I had no access to a kitchen or garden, and was stopped from my daily walking, I would feel upset and undoubtedly become anxious, distressed and eventually angry if this infringement of my right to live my own life persisted.
It is imperative that consumers’ views are included in the design of residential care homes, and that their needs are considered more important than the needs of either family or site owners. After all, they(we) are the ones who will be living there.
Kate Swaffer is CEO, Chair and Co-founder of Dementia Alliance International, Member, World Dementia Council, Board member, Alzheimer’s Disease International, and a PhD Candidate at the University of Wollongong. Contact Kate via www.kateswaffer.com
- The Dementia Enabling Environment Principles are based on the work of Professor Richard Fleming and Kirsty Bennett, at the University of Wollongong: Dementia enabling environment principles
- Fleming R (2011) An environmental audit tool suitable for use in homelike facilities for people with dementia. Australasian Journal on Ageing 30(3) 108-112.
- Swaffer K (2016) What the hell happened to my brain?: living beyond dementia. London: Jessica Kingsley Publishers.
This article was first published in the Australian Journal of Dementia Care (www.journalofdementiacare.com) Vol 5 No 3 June/July 2016. An edited extract is republished here with the permission of the author and Hawker Publications Australia Pty Ltd.