What People with Dementia Want

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.

 

It is clear that 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 (RACF).

With this in mind, I write about the design of RACFs, and what people with dementia want, as opposed to what those who often are responsible for placing a person with dementia into a RACF might want. In running a number of focus groups and interviews with people with dementia over the past 18 months, it is clear the goals are disparate, and engaging with us, even at the design stage of RACFs, will be useful, particularly in the climate of increasing Consumer Directed Care.

Market-driven model

The Australian Government announced significant reforms to home care in the 2015-16 Budget, and the aged care reforms are now well under way. Early changes, for example, will mean that a home care package will follow the consumer and we will also be able to change providers. In addition, all applicable charges will be published on the government’s My Aged Care website (www.myagedcare.gov.au). This will translate into the residential care sector as well, and with greater choice and more transparency, consumers will be more inclined to make demands previously not seen before in this sector.

It moves us to a market-driven service model and one that is starting to have significant impact on providers across Australia, hence the increasing call for me to run focus groups with consumers with dementia. Providers will need strategies to remain competitive in the residential care market, and will need to improve their business management and leadership, improve staff-to-client ratios and increase levels of dementia education, and importantly, improve the design of their facilities.

What consumers want

From the seven focus groups for over 80 people with dementia and online interviews with hundreds of other individuals with dementia and care partners that I have conducted in the past 18 months, this is what consumers have said they want in residential care:

  • Re-ablement.
  • 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 more edible than what they have seen or heard about in may RACFs.
  • Flexible routines.
  • Absence of apparent barriers / walls.
  • A screen for audiovisual 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 – ideas and suggestions are taken seriously, can influence services (eg, how many settings for dinner), getting people involved in the process.
  • 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.

Human rights

Listening to consumers may be the best place to start when it comes to improving the design of care homes, and it is not just about choice. It is fast becoming about human rights for people with dementia; the first submission on human rights by people with dementia was made recently to the United Nations Committee on the Rights of Persons With Disabilities via Dementia Alliance International (DAI). DAI has also just released its first official publication, The human rights of people living with dementia: from rhetoric to reality, available on its website, as a guide to educate and support the activities of individuals and organisations in this area.

When looking for residential care for ourselves or someone we support, there are four key questions we are often told to ask and that are considered specific to the needs of the person moving into care:

  1. 1. Is the RACF providing culturally appropriate care and services, including culturally appropriate food?
  2. 2. Are the person’s relatives and friends encouraged to be involved?
  3. 3. What non-medication therapies are used in the RACF? What forms of restraint are used, including chemical and physical? How do staff engage residents throughout the day?
  4. 4. How do they support residents and families through the end-of-life care process, and do they engage with or bring in specialist community palliative care teams?

One very important point missing in this list of considerations is whether the 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 RACFs are working to the financial and design specifications of the owners who are funding the building. RACFs were originally designed in a style similar to hospitals, to support the medical model of care. This meant they have historically been build 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. This also meant most of the bedrooms were also share rooms, mostly twin share of four-bed “wards” or rooms, as it was in hospitals.

This model is still very much the same as the one being used in most RACFs today in aged and dementia care, 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 – the residents.

Caring for younger residents

Many years ago children were removed from institutional accommodation because it was realised they were more at risk of poorer care and abuse, and yet our aged and dementia care industry is breaking its neck to build more institutional facilities, many having little consideration for how appropriate they are for the age of their residents. In a focus group I ran in Adelaide earlier this year one young son of a person with dementia said: “My dad died from dementia in an old person’ home when he was 42;… how can that even be legal that my Dad had to live there in the first place?!”

This 17-year-old lad, whose father died when he was 15, spoke out loudly about knowing, intuitively, that he himself would never have been placed into an adult hospital ward when he was a child, and about how wrong it is that young people with dementia, or any other condition where residential care is required, have no choice but to be housed with people sometimes more than 40 years older. With almost 26,000 people in Australia living with younger onset dementia, this is becoming increasingly important. The design and decor of care homes for younger people should be much different to that of the older population, as would the food, IT requirements, recreational activities and so on.

Safety vs autonomy

Almost certainly RACFs are designed to satisfy the expectations of owners, budgets, profit margins, shareholders, bureaucracy, governments, accreditation agencies and the sons and daughters who usually make the decision about placement into residential care and want us to be kept safe. They have little to do with the autonomy we all want for ourselves. Autonomy, which is simply the condition or quality of being autonomous, of independence, is a basic human right, as is risk taking, even with dementia.

In my book, What the hell happened to my brain?: living beyond dementia, I added this quote from Keren Brown Wilson (Swaffer 2016 P331): “ Safety is what we want for those we love, and autonomy is what we want for ourselves”. This is significant when we think about the disparities between the points of view of the person with dementia and those of their daughters, sons, families or support persons about what a RACF should be like. I have no doubt the safety factor influences both the design of and the model of care provided by RACFs far more than is necessary, or indeed helpful, to the well-being and quality of life of those living in them. The young son I referred to earlier said he would rather die than go through the humiliation and loss of dignity he felt his father endured when he had no choice but to go into institutional-style aged care.

Being dementia friendly

It may seem a little off topic in this article, but I believe the design of RACFs also needs to consider the global dementia-friendly community campaigns. Being dementia friendly means more than being friendly. From the perspective of people living with a diagnosis of dementia, it is not about being friendly, or simple awareness of what dementia is. It is about how we are treated and supported. It is so much more than what the professionals and interested others (without dementia) who are working to make our community ‘dementia friendly’ think it is. It is about:

  • Respect
  • Human rights and disability rights, including access to the Convention on the Rights of Persons with Disabilities (CRPD)
  • Non-discrimination
  • Full inclusion
  • Our right to citizenship autonomy
  • Equality
  • Equity
  • Access
  • Dementia enabling environments
  • Support for ‘disAbilites’

This is very relevant to the design and management of RACFs, including the model of care being provided, as 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. Signage, lighting and design all come into this as well. Dementia enabling design is not necessarily costly or difficult to provide, and I hope in Australia we soon legislate it to ensure RACF owners and designers do the right thing.

Due to increasing cognitive and physical disabilities caused by cognitive decline, a suitably designed physical environment is recognised as important in providing optimum accommodation to ensure comfort, assisting with way finding and to promote independence. Unsurprisingly, most people, regardless of comorbidities including dementia, wish to continue to live in their own home, in the community and with the same access to social and recreational support, as well as health services that support them to continue to do so.

Contact with family members and friends is often crucial to the health and well-being of continuing care residents, and it is therefore in the best interests of the designers of residential care facilities that they build with this in mind. Access for families and friends to visit, as well as to engage in activities within the facility or outside in the community, at times that suit the residents and their family and friends, not the routine of the home, is imperative.

Dementia enabling design

The design of residential care facilities needs to be done using the dementia enabling environment guidelines and philosophies referred to earlier in this article, so they promote not only a physical environment that is enabling, but an enabling social and recreational environment as well. From my observations and talking to others working in this field I have heard that less than 50% of new aged and dementia care builds in Australia bother to do this, regardless of the fact these guidelines are free (www.enablingenvironments.com.au), and far more importantly, significantly improve the quality of life of the people who will be living there. It is likely that we will have to legislate in residential care in the same way that people running commercial kitchens eventually had to be legislated to convert their kitchens to Hazard Analysis and Critical Control Points (HACCP) accreditation standards.

It is not necessarily more expensive to design a dementia-specific area that is also dementia enabling and the cost of the care provided will be cheaper if it is done this way. 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 (BPSD), and therefore the use of costly medication or additional staff or support services, will be reduced. There is still too much of ‘we have done it like this before’, and not enough of looking to the best interests of the clients’ welfare. Facilities that look like they are from the pages of a glossy home design magazine do not necessarily provide optimal care; this is based 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 BPSD being experienced by up to 90 of people with dementia in residential care. If we improve these things, I believe this figure may well go down to only 10%.

Creating a home

Whilst 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. No doubt the view of the family care partners versus the person with dementia is vastly different. We want autonomy. They want us to be safe. We want freedom and a front door key. They want the doors locked. They (and the paid staff) are taught to see our walking as wandering that needs to be ‘managed’; we just want to walk. They see locking us up as keeping us safe and knowing where we are. We see and feel like this is being locked in jail.

By the time we probably do need care we don’t know we need it and we don’t want to be in care, so it is no wonder we get angry or upset. We want to continue to live in our own home, the place we have always lived. We are sold the concept of this being our new home, also known as a residential care facility, but then again, we are not given they key to the front door of our new home. How can it be our new home if we don’t have our own keys and can’t get out? On top of this, we are expected to live communally with strangers and eat in dining rooms with people we have never met, and may not ever get to like.

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. In a focus group I ran in Sydney in 2015, one woman with dementia said, when asked what was important to her: “My home is my world so I need staff that I know and who know me – who know my idiosyncrasies; to have consistency and routine is extremely important – without these I become confused and disoriented and my anxiety goes through the roof, and [I need to know] that those who support me will encourage my independence, follow my needs, assist where I need assistance, allow me to do what I can do on my own; maximise my control in my own environment”.

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 RACF, everyone, including the staff, owners, our family and friends, should come into our small private space only as our invited guest.

Kate Legge wrote a piece in The Australian (March 10-11, 2014) called How do you shrink a big life into a small suitcase? Around the same time I had an article published in this journal called Human rights in residential aged care: a consumer’s perspective (Australian Journal of Dementia Care 3 (1) February/March 2014). The two articles looked at aged care, mine telling tales of woe, hers telling of the good experience she had with her father. Sadly, the positive stories are few and far between. It is almost impossible to pack a lifetime into a small suitcase, therefore it is imperative we design RACFs that are more like our homes. From personal experience I know how difficult it was for three of my family members to leave their homes and independence, to live in a RACF in a small room with a single bed, with a lot of strangers. In reality, no-one wants this, and it is clear from the media and in research that people say they want to die at home.

If I must go into a RACF I will expect that it has been designed using the principles and philosophy of dementia enabling environments, and that not only will it look reasonably comfortable and inviting, it will smell like home, not urine, it will enable my independence and, most importantly, even if it has fences it will not make me feel locked in jail. Whilst the front door may be locked (as it is in my own home now), I will expect access to outside areas, gardens and recreational facilities.

Getting it right

There are a few organisations in Australia who are using these 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; in particular I advocate strongly for government to support the Group Homes Australia model of residential accommodation to enable it to be rolled out to all socio-economic areas.

Conclusion

Many things come down to perception. If I could not get outside through any of the doors, 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.

From my conversations with consumers it seems imperative that their views are included in the design of residential care homes, and 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.

*The Dementia Enabling Environment Principles are based on the work of Professor Richard Fleming and Kirsty Bennett, at the University of Wollongong. These 10 principles have an evidence base and were developed to guide the design of residential facilities for people with dementia.