The idea of society being dementia friendly, in the same way it accommodates others with disabilities, for example the sight impaired or people in wheelchairs, is something to aspire to. In a report Creating Dementia Friendly Physical & Social Environments: A new resource for residential & respite care facilities funded by the Victorian government it says a dementia friendly environment is one that is …a cohesive system of support that recognises the experiences of the person with dementia and best provides assistance for the person to remain engaged in everyday life in a meaningful way. This and hundreds of other articles and reports talk the talk of person centred care, and of quality care that encompasses the person as a whole human being, but from what I see it does not equate to the real experience of those of us living with dementia, not in the residential setting or in the community. So what does being dementia friendly really mean?
I rather like the following, from Needs and abilities of people with dementia
“The physical and social environments and structure of the organisation can work together to support the unique needs and abilities of people with dementia. A dementia-friendly environment helps people with dementia reach their full potential and does not cause needless disability. The result is quality of life for people with dementia, their families and staff.
There are five major needs of people with dementia, and they shape person-centred care.
- Comfort People living with dementia may have a sense of loss, causing anxiety and insecurity. They need an environment of comfort and empowerment.
- Attachment The need for attachment is strong in each of us, more than ever when we feel like a stranger in someone else’s environment. People with dementia need to feel a sense of belonging.
- Inclusion People with dementia can find it hard to be included in situations where others do not have the same impairment. Individualised care and physical settings help people feel they are part of a group.
- Occupation Being occupied means being involved in everyday life. Carers and designers need to create conditions that support social involvement, drawing on people’s experiences, strengths and abilities.
- Identity A person with dementia is unique. A person’s life-story should be built into all interactions in the care setting.” Kitwood 1997
There is a lot to do to better serve the needs of people with dementia, and working in the areas that are supposed to specialise in dementia care is a priority. From what I see, those people with dementia living in residential settings are often still being managed with physical or pharmacological restraint, the first thing that I believe needs to change to truly honour personhood. Having a page inside the nursing notes about a person’s life-hood, does not equate to person centred care. If we don’t get it right in those specialised settings, then how will we ever realise the dream of a dementia friendly city or society.
When attending a conference a few years ago for university disability advisors and disabled students, the venue had even set aside an outside area on a roof with sand for the guide dogs toileting area. There was no stigma surrounding the use of a cane or guide dog, but the stigma persists around dementia. At the ADI London conference I met a woman from Belgium who inspired me greatly and has set up dementia friendly cities in her country. I think she started in Liege, and there are now 25 dementia friendly cities in Belgium. But what does this mean? Does it mean cab drivers, hotel staff, retail assistants, hospital staff, and all other community service providers will have had some education about dementia, and how to treat people with dementia? Does it mean we will be given more time to think without the external venting of the waiting persons frustration? Does it mean if we participate in conferences, we will be on the agenda earlier, and given more time? Does it mean our families and friends will change the way they have responded to us having dementia? Does it mean the stigma will be lifted? Does it mean people will stop saying, but you can’t have dementia simply because we are doing well, or they can’t see our symptoms.
Does it mean we will be encouraged to continue to live our lives, with assistance to manage our disabilities just like other disabled people, rather than be told to disengage from our pre-dementia lives?
I am hoping this blog will open up some dialogue on this topic. I have been told by Robyn Verrall the Keith Hospital, a regional South Australian hospital fighting for its existence and proper funding, treats their dementia and aged care clients well and there is a focus on honouring the individual, and setting up activities that suit each person encouraging meaningful involvement, not just activities for the masses. It may be easier to do this in a rural setting as the numbers of patients may be less than in a metropolitan setting, but I would hazard a guess that the staff to client ratio is no higher there, and it is more to do with practice and attitude. Please share any ideas you have, to help bring this dream of a dementia friendly world closer to a reality.
Reblogged this on Elder Advocates.
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Thank you to Carol Anne Cronk. Your description of your reality is also part of our experience. The key ingredient to your coping is getting that diagnosis, accepting it, and managing the bit by bit deterioration. It isn’t an “I have dementia”, is it? It is that I have a brain disease which will lead me to dementia eventually, so excuse my bad spelling and let’s get on with life.
Jeff
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ditto ditto ditto
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This is an article from the Alzheimer’s Europe 2011 Newsletter
18 June 2011: La Ligue Alzheimer’s projects presented at a conference organised by the World Health Organisation.
Two projects from the Belgian French-speaking association la Ligue Alzheimer were presented at the World Health Organisation’s (WHO) “European Healthy Cities Networks Annual Business and Technical Conference”, which took place in Liège, Belgium, from 15 to 18 June. The projects presented by the association were the ‘Dementia friendly cities’ and the ‘Alzheimer Cafés’.
The Dementia Friendly Cities are a network of cities which hold and develop activities related to Alzheimer’s Disease (training sessions ‘Circle of Care’; Alzheimer Cafés; home assistance to carers;…) in consultation with ‘La Ligue Alzheimer. These activities must be free of charge.
The objective of the Dementia Friendly Cities initiative is to encourage the inclusion of people with dementia within their community. Each activity must contribute to an improvement of the quality of life of people with dementia and their carers, a goal that was set up on the basis of the World Health Organisation’s (WHO’s) Age-friendly Cities.
One of the activities developed within the Dementia Friendly Cities’ framework is the Alzheimer Café. This Café gives the opportunity to talk about the disease and share experiences in informal and friendly surroundings, outside places such as hospital or nursing homes.
Moreover, the Alzheimer Café can be the place where carers identify what a person with dementia is still able to do and also identify those tasks which may be too challenging. This, in turn, can spur people with dementia and his/her carer on going out more often and to regain self-esteem and confidence in their ability to socialize.
“These initiatives”, says a spokesperson of La Ligue Alzheimer – representative of patients and their carers – “proves that the association is part of the solution and is able to find equal partnerships for people with dementia in their familiar surrounding background. It also illustrates the willingness to find solutions: Where there is a will there is a way.”
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Kate Oscar and I have done much researching about our “dementia” stigmas and our communities confusion about it in our lives… We have arrived at our beliefs through our personal experience and the medical terminology of our diagnosis labels ALZ”S/ Dementia. however We are all of us that are still mentally functioing and coping in our worlds in our illness HOW we can adapting to our equirements and our needs in our illness. We have not reached “Dementia” the dictionary desciption of that “state” of mind “out of mind control out of physical abilities to have control over our bodies functions. OUR diagnosis is EARLY ONSET .. we are all heading down that Rd into that state … Unless we change our medical labels that describe as we can through our PET scans which area of our brains are being effected like “frontotemporal” frontotemporal lobar degeneration … part of mine is very early ALZ”S and the most concern in my brain is the Cingulate Gyrus.. apart from the ALZ” area I will maintain my mememory lobes possibly until the end when full Dementia will have taken me over close to the end of my life.. so when I stood at the conference saying I am a person with “DEMENTIA” NO.. I have not reached that horrid place yet and hopefully have some years ahead before entering into that state. so no wonder our families/friends and our communities are confused…. every “Dementia” diagnosis is a different brain degeneration with its different symptons… all of them taking us into that “Dementia” state where we are then living that state of being “out ot our minds” to change this situation the word “Dementia” requires change.. as thats what the word means and none of us YET are living its meaning… I believe in past years without the PET that clearly reveals our areas of our brains that are effected. and can be diagnosed as such .. we’re very early in the journey as in the past people finally diagnosed were already entering into that mental in compacity so lived out the symptons as described in ALZ”s and Dementia. this is where Oscar I sit strongly due to how I live in my early symptons and can live quite well adapting arround the envioroments that cause me anxioties and stress etc…. and now when I ever talk in public I wont be using my presentation as I am a Person with “Dementia” I will be explaining my brains degeneration that will eventually take me into “dementia” due to its continiouing degeneration.. then people can relate and understand this horrid disease and not question how I can still be functioing behind the scenes of my illness. Doesnt this make sense.. Every illness has its medical desciption and fits into it.. Ours is confusing we believe due to the technology of these PET scans that show the disease and not simply losing our minds through age related past beliefs of growing “senile” as I once perceived it to be myself . I have been guilty of judging others in their statements of having “Dementia” and living such “normal” type lifestyles. so I understand . and thats what drove me into a passion to come to where we are now in our beliefs about it all.. As I want to clarify my own illness with those arround me.. that I have not “Dementia” yet but yes I do have some “weird” social requiremnets and needs now which are apparent… but I have not lost my mind or my ability to function mostly normally YET When I have reached this “Dementia” state then I will have lost all of my mental capacity to function or have mental control over my physical funtioning.. then I will have to go into a Dementia facility. 😦 I will then have “dementia” as its medical disciption clearly expresses. Those who we have shared with about our discription about my disease as in this way has worked well they have been delighted in being able to understand this mystery about this disease. Cheers Kate sorry for such a long one but letting it all out XXXX oscar will read it and edit my ???? writing is one of my huge struggles now. xx
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There was a tv programme in the uk made by Gerry Robinson where he went round carehomes He found one where all the residents helped with the daily activities and both the residents and the carers were fulfilled and happy. I think you can get the dvd on Amazon.
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Thank you for this, I have found it on this link http://www.bbc.co.uk/programmes/b00pf0s2 so will see if I can download and watch. Otherwise I’ll try to get it from Amazon as you have suggested.
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