The Lantern Project Australia, founded by Cherie Hugo, is about giving aged care residents the quality of life they deserve through good food and nutrition.
Source: The Lantern Project Australia
The Lantern Project Australia, founded by Cherie Hugo, is about giving aged care residents the quality of life they deserve through good food and nutrition.
Source: The Lantern Project Australia
Why we need to open our hearts & listen to the people we care for
I wanted to share this beautiful video of Raelene and Soo Ren, who opened their hearts poured out their life story in this short 11-minute film. Raelene touches on the challenges in their life of being an inter-racial couple in the UK, their life settling down in Singapore in a house with 30 members of the family and later as a caregiver for her husband who is living with cognitive impairment. No matter the challenges both Raelene and Soo Ren continue to move forward in life, sharing every day together.
I also apologise for not blogging as much and not having any new articles of late. I’m currently 29 weeks pregnant and soon to start a new chapter our lives with a baby boy. In a way, Raelene and Soo Ren’s story strikes a deep chord in my heart because much like them, me and my husband are an interracial couple as well, with me being an Asian and my Husband being a Caucasian. We do face similar stigmas but possibly not those as aggressive as what Raelene and Soo Ren had experienced in the 60s and 70s. I do ponder the needs and the types of assistance that an interracial couple may require in the areas of dementia care, be it bilingual literature on dementia, or even training especially for expatriates and immigrants, hearing their stories. Most of us will become aware of the cultural differences that both will have to overcome to be together and as cognitive impairment and dementia sets in, can we say that we can we deliver care services that can meet the needs of interracial couples? Is there more that we can do?
On top of the discussions on inter-racial couples, it is also important to recognise that everyone, everyone that you see has a story. As a nurse and a personal care assistant, I have heard of stories of women who worked in the times of war in the UK, wearing their hair in “victory rolls” and working on machines, the life of a submariner and the experiences of a WW2 Vet. There was a lady who took 7 months to sail from Australia to the UK, which to me was an incredible feat in itself. A man who knew more about the history of Singapore than I did, having visited Singapore in the 70s and 80s. A lady who thought me that when it comes to fashion quality far surpasses quantity, pulling out a teal dress she bought 20 years ago for a wedding that continued to look stunning on her at 80. A teacher who taught me all about baking and I’ll never forget five women who agreed in unison that a home cooked meal was the heart and gut of marriage. They opened their heart, they brought me smiles and laughter, sharing with me their adventures, their lives and their memories. I’m here to provide care, and yet it feels like they are providing me with the knowledge and care that I need to mature and grow, learning from their experiences and their stories, nourishing my mind and my soul, an experience that no money can ever buy.
There are 23 million people living with dementia in the Asia Pacific Region in 2015, costing the region a whopping US$185 billion. Little education exists on dementia for our children aside from countries such Australia, Japan, with some children attaining information in countries such as Korea, Singapore, Taiwan and China. However, there is nothing in the national curriculums to prepare children for Dementia or help children to fully understand the need of dementia inclusive enabling communities or the preventative measures required for them to put in place at a young age to reduce their risk of dementia especially those brought about by lifestyle factors.
Ireland with slightly less than half the number of people living with dementia at approximately 20,000 people, and a population of 1.8 million and a land mass of 14,130 km2. Alzheimer’s Society reported that at least 30% of the young will know a person living with dementia. Last Wednesday it was announced on the Alzheimer’s Society website that Alzheimer’s Society and the Council for the Curriculum, Examinations and Assessment have included dementia in the school syllabus, making Northern Ireland the first to have a dementia friendly generation.
The resources are also available not just in English but also in the Irish language. Click here to view resources.
PRIMARY SCHOOL: The Archie Project from Reminiscence Learning has created a unique and innovative intergenerational awareness project to reduce the stigma associated with dementia. They believe that by engaging with young children they are dispelling the fear of dementia and changing the attitudes of our workforce for the future, providing education to support early diagnosis. Archie’s Story follows a scarecrow with dementia on his journey from exclusion to inclusion. The accompanying Archie workbook goes on to help children understand how Archie’s state of wellbeing improves by being understood, loved and included — a simple concept but one that both children and adults can relate to. The Archie Project provide books, workbooks, assemblies, scarecrow parades, Archie-related activities, training, drama and recognisable merchandise so that everyone can connect with the Archie character and learn how to engage with people with dementia in their families and communities. Links between schools and care homes enable children to put their new dementia awareness into practice. By increasing their knowledge of dementia, the project gives them confidence to interact with residents during visits to local care homes, where they take part in shared activities such as singing, gardening activities, coffee mornings, shared lunches, snooker, craft activities, tea dances and storytelling. Archie mascots encourage conversation and engagement with people at all stages of dementia. For more information visit www.reminiscencelearning.co.uk/archie (Source Alz Soc Youtube)
The promotion of dementia awareness not only helps us to create a better multi-generational dementia inclusive society but for our children, it will help them better understand the need for education and the impacts of negative lifestyle choices. A study based on a Comparison of the Prevalence of Dementia in the United States in 2000 and 2012 published in JAMA internal Medicine on the 21st November indicated that education appears to be a protector against dementia. Dr Kenneth Langa theorises that education “actually creates more, and more complicated, connections between the nerve cells so that you’re able to keep thinking normally later into life.”
In addition, Director of the Division of Behavioral and Social Research in the National Institute on Aging, John Haaga adds that “Education can not only change the brain, it can change your whole life… It affects what kind of work you do, of course. It also affects who your friends are, who you’re married to, whether you’re married. All aspects of life are affected by educational attainment.”
When children learn about dementia and the brain, they will also learn about the risk factors which will help them to adhere to healthier lifestyle choices. According to Dr Alina Cohen, “factors such as adhering to a healthy lifestyle including a diet that is rich in essential nutrients, regular exercise engagement, and having an adequate cardiovascular profile all seem to be effective ways by which to preserve cognitive function and delay cognitive decline.” This study by York University presented evidence that the delay of dementia is connected with healthy living which in turn aids higher brain function. On a whole, our children will understand the importance of education, strategies to building cognitive resilience and understand the need for a healthy lifestyle for a healthy brain. There are a whole lot more pros than cons in this picture and policy makers should really sit up and start using their brains to look at how this can be implemented. Students will be able to understand the effects of stress on the brain, the importance of prevention and help-seeking behaviours especially in the areas of anxiety and depression. On a systemic level, this will create not only a friendlier, integrated and healthier multi-generational society but one that in the future may potentially see a reduction in healthcare spending as a result of unhealthy lifestyle choices.
SECONDARY SCHOOL: In the summer of 2012, Stoke Damerel Community College was invited to become one of 21 Pioneer Schools as part of the Prime Minister’s Challenge on Dementia. The school took a unique approach to dementia education, placing it across the curriculum into as many subjects as possible and endeavouring to work in partnership with their community and local and national organisations. They placed emphasis on creative processes and outcomes, intergenerational contact and active learning. Subject leaders were actively engaged in determining the shape of dementia education in their own subjects. Some of the most successful projects at the school were those that involved creative ways of working and intergenerational activities. For example, as part of the PE curriculum, people with dementia visited the school to play croquet with year 7 students. For more information visit http://www.sdcc.net (Source Alz Soc Youtube)
In addition to Primary and Secondary school, Scout groups have also joined the cause On such program is A Million Hands a program that supports 4 main social issues, dementia being one of the four that have been selected by the young. The objective is to empower and enable the young and the youths to tackle these issues head on and have the courage to make a change. In the areas of dementia, Scouts may find themselves helping people with dementia to fight isolation or helping with awareness by teaching people to spot signs and symptoms of dementia.They may work to try and work to make communities more accessible and even work to campaign for a cure and improve the lives of people with dementia.
Dementia as part of the educational curriculum could well be a means to improve not just the future of our children but perhaps the society as a whole.
Building a dignified system where Singaporeans can choose how we want to live and how we want to say goodbye
The loss of freedom, dignity and respect in places with 11 to 25 bedded wards, lacking in privacy, with staff being paid SGD$350 a month without food and accommodation were reported in a Channel NewsAsia program known as Talking Point. In addition, it was also mentioned by author and research Ms Radha Basu one staff member can be observed responsible for 20 to 32 residents in the night, and residents live with bare necessities such as a toothbrush, bed and a cabinet. The lifestyle was found to be highly regimented with the journalist sharing that there are were only 2 options for times for showers at 6 am or 7 am. “it was like a hospital for the rest of your life” stated television host Anita Kapoor. She also states that “it’s not a criticism of the facilities themselves, it’s a criticism of the system. You cannot approach eldercare the way you approach hospital visits. It can’t just be a means to an end need. It is a life. You have to think in terms of life and end of life.”
– television host, Anita Kapoor, 45 years of age.
I applaud Ms Kapoor for taking a stand and putting herself in the resident’s place, experiencing the environment literally for a fortnight first hand, living as residents lived.
Like my previous article about Singapore nursing homes, our story of the wooden bowl? I questioned how we want to care for our older adults, our parents, our grandparents, given the state of the nursing homes in Singapore. How do we care for our loved ones in Singapore with dementia without dementia enabling built environments?
My thoughts have constantly been being echoed in this programme. Pushing for better environments for people with dementia. I dare to say that I can dream for a day when Singapore will be able to have facilities that advocate for independence, dignity and respect for residents. Seeing an assisted living facility in the heart of Bukit Timah, it’s heartwarming and inspiring to see the St Bernadette Lifestyle village, assisted living facility that is just like a home.
It is with a flicker of hope that one day we can have facilities like intergenerational nursing homes inspired from our HDB designs (Taking a leaf from HDB flats for Pocket Gardens & Intergenerational Nursing Homes) which we call home.
In the meantime, I will keep working on a dementia enabling environmental audit tool for Singapore in the hope that we will be able to create dementia enabling long-term care facilities that Singaporeans can call home.
Watch the full episode here http://video.toggle.sg/en/series/talking-point-2016/ep24/458260
This is such a heartwarming facility, perhaps not the most dementia-friendly, but it is beautiful, enchanting and absolutely lovely. Nursing homes done differently. Food for thought, this nursing home in Japan was designed by 2 women and is known as Jikka. Created by architect Issei Suma, this facility in the mountains of Shizuoka Prefecture and brings together the community into the care facility.
Wheelchair accessible spa.
I spoke to a few people about dementia recently and some were shocked at the fact that people with dementia are able to live in the community. I was quite surprised at the fact that they were surprised, I guess to me it’s been such a norm that I forget that people have different ideas and perceptions about people with dementia. One person even said to me that she thought people with dementia were people who have forgotten how to do anything, and that they get lost all the time, and maybe scream a lot or are angry. Or people who sat around in nursing homes and were the shell of themselves and stared into space all day. It was an incredibly painful feeling to sit and know that people with dementia are thought of that way.
However, with the media continuously labelling people with dementia as “sufferers” and movies portraying people with dementia as people with high care needs, staring into space or being highly disabled, it’s no wonder people have such negative stereotypes. In a cab ride last week, a cab driver pointed out that there’s not much point designing services for people with dementia since there will be a cure or a vaccine out in 5 to 10 years; he had seen the headline in the papers. I listed out the evidence on vaccine development and talked about the damaging impacts of the media and highly misleading headlines that are taking away the focus of providing care to people who are now living with dementia in the public eye. Again, who could blame him, he’s seen it in the papers. I left the cab feeling frustrated.
Media gurus with little understanding of dementia undermine the objective and essence of research, turning publications into another holy grail headline but it is their job to create publicity for the institution or organisation, and most of the time the rehashed facts are close but no cigar. Do these media personnel understand the devastating effect this has on people with dementia and their families, to be constantly thrown a lifeline every day that says a cure has been established only to find out it’s another sensational headline in the making.
Coming back to the person with dementia? Can the media change the way dementia is portrayed? An associate shared a good example of enablement. He talked about how he has a visual impairment and in the past without the aid of glasses, he would be severely disabled, however ,with glasses, he is enabled and can function just like everyone else. People with glasses are accepted just like everyone else. So how can we change the way the public think, accept and include people with cognitive impairment, in the same way as visual impairment? You don’t see a headline every day screaming that my vision can be cured or there’s a vaccine developed for my short-sightedness, could this be attributed to the knowledge base of media personnel having an understanding of visual impairment.
I’ve attached a 6 min trailer of the Last Laugh; here Kate Swaffer shares her experience of living with dementia and her experience after receiving a diagnosis of dementia. She’s an amazing woman, championing the rights of people with dementia, working on her Ph.D., is the inaugural Chair of the Alzheimer’s Australia Dementia Advisory Committee, author of “what the hell happened to my brain” and a founding member of the dementia alliance international.
Below is a video featuring the amazing Christine Bryden who has been living with dementia for 20 years and has been advocating for better quality of care and life for people with dementia. She was diagnosed with dementia in 1995 and when she was diagnosed with Alzheimer’s Disease at 46, doctors had prescribed that she stop working and prepare herself for the inevitable. 20 years now, Christine is an author of 2 books, lectures international, is a well-known dementia advocate in Japan, completed her post-graduate studies and is into her 15th year of marriage.
These active champions who have never given up, are true heroes in the face of dementia, and their hard work to make a change while living with dementia is truly admirable. However, looking back at my home encounters in the last couple of weeks, it was a stark reminder that we still have a lot of work to do in the space of creating awareness about dementia in Asia, because what we think a person with dementia should look like, is not reflective of reality at all.
I recently visited a friend living at Dawson and was really surprised at the gardens located on the upper floors of the housing development board (HDB) flat. There was a sky garden right up the top, but there were gardens found in between the floors as well. There isn’t a void deck in the traditional sense like the older flats would have, instead there are familiar seating areas found in these pocket gardens for the residents which are just like a void deck but with a beautiful view of Singapore filled with a range of greenery that stimulate the senses.
There’s safety and security features found in the garden as well, from lighting, to security cameras, handrails, and high vertical railings. For most parts the garden I visited was sheltered from the weather. There were even play area for kids.
I’ve got a few images of the gardens to share with everyone.
Security Cameras, Handrails & Railing
The image below on the left is from a separate HDB block. I added this image in because this was actually a bridge from the HDB flats to the garden. Residents have personalise the bottom of the handrails with little plants of their own on this bridge. The path is open to rain and other environmental conditions, however, the design intrigued me as the gardens are separate from the residents providing me thoughts on how we can link intergenerational services in one facility.
The railing are really high too, approximately 1.3m in height, but enough that doesn’t have a caged in feel. I understand a lot of clinical staff would be concern about safety in nursing homes especially in the gardens. You can see behind me that an array plants have been strategically placed in front of the railing of fence. Below is the front view of the same railing behind me with the plants in the frnt. You can see that the beautiful lush greenery of the plants distract and divert attention away from the railing that appears to be muted, disappearing into the background.
There is a number of wheelchair friendly access to the garden as seen below and handrails of different heights. The handrails were not smooth and provided some grip.
Positive Stimulation (lighting, ceiling, temperature, sound)
The area is flushed with natural light and ventilation.Hanging lights and discreet lighting are placed strategically around the garden and sitting area. High ceiling seen in the garden according to Vartanian et al (2015) are seen to be
We all know that the Amygdala hijacks our rational thoughts and sends us all into a fight or flights behaviour. For designers working on environmental design for people with dementia, this may be something that we may wish to consider in the design of healing or therapeutic gardens and spaces to reduce the activation and evolutionary response to fear and anxiety brough about by the amygdala.
Due to the lack of direct exposure to the sun, the temperature was cool and breezy, which made it quite relaxing even for a 32 degree day in Singapore. The chairs were cool to sit on, and none of the siting area was hot to touch. Despite a few older adults, and teenagers hanging around in the area, chatting in the afternoon, I could not hear their conversations until I am right beside them. The area did not appear noisy despite the moderate number of people hanging about.
Familiar & Inclusive Environments
The garden also contained a number of familiar tables and chairs that we see at our local Kopithams (coffeeshops) found in HDB estates and food courts.
Areas inclusive for children were also found in the garden containing a little area for hop scotch and for a game of snakes and ladders.
Just looking at the garden, and thinking back on nursing home in Singapore, Nursing Homes can be integrated with other services to serve a multitude of generations and become a truely multigenerational facility such as the design below.The draft below is inspired by this garden and thoughts of an integenerational facility.
I also notice the tables and chairs were great for students as study area but lack facilties such as powerpoints. Living in a crowded, high density city, finding study areas are getting harder by the minute. For people in the western world, this is our Asian phenomennon. We use to joke that rich kids get to study in Starbucks and fork out a ton for drinks while us poorer kids try and tough it out in the libraries or at the cloest Macdonalds or Mos buger. However, libraries may not be close to home, and if we wanted to study in a group, finding a location gets pretty tough. anyway who has to tough it out in eateries to study have to put up with the noise.
Older adults can participate in activities after they have sent their grandkids to kindergarden, or school and all come together in the mornings and return home in the evenings. Grandparents can also relax with their grandchildren in the public garden, grab a coffee and catch up with friends before meeting up with their kids and going home together. This is a dream for a place where communities and families can come together to build that kampung spirit.
If there is a multi-generation facility such as the ones found above, families can remind tigher and stronger despite hussle and bussle of our urbanised cities and dual income lives. We are already spending much time on transport and work, what we really need is some solutions to help support us with maintaining our relationships with out familiies to build a stronger, tighter, and caring Singapore, and we know it starts with family.
More than 225,000 people develop dementia every year – that’s roughly one person every three minute. At the moment, 850,000 people in the UK are living with dementia. This figure is set to rise to two million by 2051.
Dementia is a progressive disease of the brain that mainly affects older people – although is not a “normal” part of ageing. Of the 850 000 known cases of dementia in the UK, some 40,000 are aged under 65.
It is a collection of brain diseases – with Alzheimer’s the most common – and is not just about memory loss. Everyone experiences it differently, from behaviour change, to difficulty processing conversations, to confusion over everyday tasks – such as working out how to make a cup of tea.
As academics researching in this area with other organisations, we work directly alongside people living with dementia, as well as their carers, families and communities. And while we understand a lot about the disease – including how it affects a person’s health and the impact it can have on their personal lives – we do not know what it’s really like to live with dementia, day in, day out.
This is why it’s critical to listen to those who can tell it as it is – which is what a large part of our research is about. Susan Small who was a dementia support worker and a carer says:
People should not be defined by their dementia, but given opportunities and experiences to enjoy life and relationships – and indeed take a few risks now again. We need to learn to listen more to what the person with dementia is telling us.
It is important for people to get a correct, early diagnosis, as long as it is followed up with timely information and support. Too little information can leave the person with dementia and those close to them, feeling ill prepared – yet too much information can leave people fearful of their future.
Barbara Dow who cared for her husband Al and is now a dementia campaigner agrees, stressing that a timely diagnosis enabled them to plan for the future together. This meant they could move house to be nearer to family and facilities where they could both continue much loved hobbies such as dancing. She said:
Al continued to lead a full life to the best of his abilities. If he could not dance, then he could go to the gym and swim.
She also speaks of humour lessening frustration and maintaining self-esteem:
Al might forget who had just spoken on the phone. We used to say it was Mr or Mrs Whatsit, have a bit of a laugh together about it and then I would dial 1471.
People living with dementia – and their carers – also speak of the need to emphasise what is achieved, rather than what isn’t.
Ken Clasper, a university college engineer, was diagnosed with Lewy Body dementia at the age of 56. This is the same type of dementia that actor Robin Williams had and can cause depression, paranoia, Parkinson’s disease and confusion.
Clasper told us that although he may need more time to process information, “please don’t answer for me, just give me time”. He suggests that it’s also important for others to know the person with dementia, and for example, their life-long interests and passions. He is a keen nature lover and photographer and bought equipment that helps him to continue to take photographs.
Other people with dementia have spoken of enjoying being outdoors on their own, and while this may cause some understandable anxiety to friends and family, they stress the importance of being able to “get on with life in their own way” – with family and community support.
These experiences show that much of living with dementia is about cycles of loss and adjustment, of change and adaptation – and of partial resolution. Partial, because life does not stay the same – we shift and change with circumstance as a progressive disease is experienced and lived through.
As the Alzheimer’s Society’s campaign to unite against dementia succinctly portrays, how this indiscriminate disease can affect anyone.
How a person might live with dementia depends on who they are, their own individual diagnosis as well as their support network and connections. But it is important to remember that people can and do live well with dementia.
Of course, there will be peaks and troughs, good days and bad, but rather than just seeing everyone with dementia as “sufferers”, or as “brave battlers” of a debilitating disease, it is important to remember that dementia can be lived with as well. To do this, we need to listen to and learn from, those who know what it’s really like – those people who have the actual lived experience.
Catherine Bailey, Senior Research Fellow in Public Health and Wellbeing, Northumbria University, Newcastle; Katie Brittain, Associate Professor of Ageing & Health, Northumbria University, Newcastle, and Sue Tiplady, Senior Lecturer Adult Nursing, Northumbria University, Newcastle
This beautiful and informative video presents 16 mental conditions in the simplest means possible. Everything from Anxiety to Narcolepsy. This video is not only well crafted but in-depth in the rep[resentation of each condition. If your brain or your mind was a house, a built environment, a piece of architecture. A bit more than a minute and a half, this display of form and functionality at its best to help people better understand, distinguish and discuss mental health through visual art.
A big thank you to the Dementia Behaviour Management Advisory Service team (DBMAS)! I’ve always found this very helpful working with residents with dementia. I hope you will find this helpful too. For the PDF version please click here and to visit the Australian Dementia Behaviour Management Advisory Service website click here.