By Vicky Wallace
It is Dementia Awareness Week this week (16-22 Sept 2013) and if you have not been personally affected by this disease (you or your parent or relative may have been diagnosed), it really is only a matter of time before you will be affected.
The number of Australian dementia patients is estimated to triple by 2050: that is an increase from 320,000 Australians with dementia to 900,000. There is currently no cure but there is hope.
The story on ‘The Hoopla’ recently “I can live well with Dementia” not only provides awareness for Dementia Awareness Week, but gives hope and inspiration to those who are diagnosed with the disease.
“If you are diagnosed early and get the right help and support, there are some drugs that can delay the progression of the disease. While they’re not a cure, they can help people live well in their home or with their family for a longer period of time. And there’s still a lot of things people living with dementia can do, depending on the progression of the disease. People shouldn’t take a diagnosis as a sign to stop being active or doing the things they love. Quite the opposite”.
However, there are many people living with Dementia who live in an aged-care facility. They can no longer look after themselves or be cared for in their own home. So I wanted to share some information which you may find useful.
The following appeared as our feature story in the UOW Research magazine a little while ago. It highlights the research by Professor Richard Fleming, the Director of the NSW/ACT Dementia Training and Study Centre, who is working towards creating “dementia friendly cities” by:
- Retrofitting existing dementia care facilities to improve design;
- Building new and more compact dementia care facilities that facilitate less confusion for patients;
- Removing unnecessary stimulation, while encouraging positive engagement.
- Training and retraining of medical staff to better manage patients and understand behaviours such as ‘escaping’ a care facility.
- Introducing volunteer dementia programs to create a friendlier neighbourhood.
RETROFITTING AND BUIDLING NEW CARE FACILITIES
Complicated building designs which cause confusion, by preventing patients from finding their way, can cause disorientation and stress. Retrofitting existing facilities can be difficult but there are some simple changes which can be applied.
Providing well-defined pathways supports movement and engagement and helps prevent stumbles and falls. Good visual access provides opportunities for engagement and gives a patient confidence to explore.
As you age, colour contrast becomes more difficult, so the use of strongly contrasting colours on doors and door frames can help patients locate rooms.
“It’s a simple idea really – and one that can also be applied to the dining table, and chair colours. And you can even extend that to the dinner plates and food. Some white mashed potato on a white plate will generally not be seen” says Prof. Fleming.
The size of the care facility can also make a big impact on the level of confusion and affect the behaviour of a dementia patient. If the facility is large there will inevitably be long corridors of resident rooms, with some located quite a distance away from the central lounge and dining area. Being able to see these shared spaces is important for patients.
The number of people that the person with dementia encounters is also intimidating and can cause agitation. This is difficult to address in an existing facility but must be considered when planning and building new and smaller care facilities.
REDUCE UNHELPFUL STIMULATION
As dementia reduces the ability to filter stimulation a person may become quite stressed by prolonged exposure to large amounts of stimulation. For example, a lounge chair is commonly located in front of a television in the patient’s room to provide entertainment and ‘company’. According to Professor Fleming the environment should be designed to minimise unhelpful stimuli and be balanced by highlighting stimuli that are important to the residents.
He suggests positioning the lounge chair towards a window which could look out into a garden or an outside visiting area, or bird aviary. If these outlooks are not possible, a display of personal memorabilia and photos could be beneficial. The familiarity of the personal objects to the resident is comforting.
IS HIGH SECURITY NECESSARY ?
Many dementia facilities are high security which essentially means patients are locked in. Carers will choose this type of facility because they are concerned their loved ones will escape or wander off. In the early stages of the disease patients often try to leave the facility to return to their home. This can cause anxiety and sometimes violent behaviour as their need to escape is quite strong.
Prof. Fleming has visited many dementia facilities overseas where there are no tall fences, and no locked doors. In Norway it is illegal to lock people up because of dementia. The person’s security is protected by providing sufficient staff numbers.
“If a patient wants to leave, the door is open and they can choose to walk out. The difference is the response by staff. Staff can recognise that the patient would like to leave the care facility, so they accompany them for a walk. So it’s a staffing issue and training of staff to deal with these types of patient behaviours” says Prof. Fleming.
Neighbourhoods have a capacity to support dementia patients in ways we are only starting to understand here in Australia. A volunteer program for the immediate neighbourhood of a facility (and in general) can play a significant role in creating a dementia friendly city.
“These volunteer programs are common in Finland and Japan.” Says Prof. Fleming.
“People are taught to identify a dementia patient who may have wandered from their home or facility. They can engage with them, show support and friendship. The patient may be confused, lost or simply lonely. Millions of volunteers in Japan have been trained to recognise a person with Dementia and to provide assistance”.
ACUTE CARE FUNDING FOR DEMENTIA-FRIENDLY HOSPITALS
The NSW/ACT Dementia Training Study Centre has received a $200,000 boost to its budget from the Federal Department of Health and Ageing DoHA for improvements in acute hospital services for people with dementia. Professor Fleming said the funding will support two-day workshops on designing dementia-friendly hospitals in every state and consultancy on at least 25 hospital-based projects across Australia, by the end of this year.
Professor Fleming’s original funding application to DoHA was to provide education and consultancy on the design of dementia-friendly environments to architects, hospital planners and managers working on the plans for new or refurbished hospital facilities in NSW. However, DoHA advised Professor Fleming to resubmit his application as an Australia-wide project, which has now been approved.
“It is very encouraging to see the importance of the built environment being recognised,’’ Professor Fleming said.
“There has been good quality research carried out on designing residential care environments for people with dementia, but the hospital environment has been largely neglected. This project will enable us to apply the knowledge that we have and, hopefully, set the stage for future research into designing for the special needs of people with dementia undergoing the stresses of hospital admission.”
Interested in making a difference? There are a few things you can do:
Donate to the Dementia friendly city fund http://www.youruowcommunity.edu.au/donate-to-dementia-research
Attend a workshop run by the Dementia Training and Study Centre
Read more – Subscribe to the ‘Australian Journal of Dementia Care”
Volunteer to help at a local aged care facility.