Category Archives: Dementia: International Policies

Dementia, prevention & our children

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.

Why we need Geriatric ERs in Asia

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CNN (Source: Geriatric ERs reduce stress, risks for older patients – CNN.com) recently touched on the need for Geriatric emergency rooms (ER) that can provide seniors with better care. According to the world bank, in 2010 there were 211 million older adults 65 years and above in East Asia and even in a little island in Singapore, by 2020, 1 in 5 Singaporean will be an older Adult. We have hospitals for children across Asia, isn’t it about time we started having at least an ER for older adults? Wouldn’t this not only be beneficial to the patient and their family but beneficial to the outputs in terms of care and the cost to the system as well. We all know that hospitals are detrimental environments for older adults and especially so for people with dementia.

  • unfamiliar alien environment
  • difficulty in orientation
  • high levels of negative stimulation from noise, smell, temperature…
  • constant interruptions to sleep well into the night
  • lack of autonomy
  • lack of natural light

We also know the benefits for the patient if we improve the acute environment and the care provided, but there are also wider benefits for society and especially for the family. With dependency ratios increasing in Asia and higher life expectancy rates, think China, with 1.3 billion people and a 4,2,1 family structure. With 4 grandparents, a couple, and their child, and now with the removal of the one-child policy, you may have 2 children in the family. If an older adult has been admitted into the emergency room the stressors on the family, especially the working adult will be incredible. Anyone who is a parent and are caring for parents will know this. This is not inclusive of the 30 million bachelors in China who will be the sole caregiver of their parents. How can we have an effective workforce if there is a constant worry that our parents are not getting adequate medical care in hospitals, on top of juggling work, kids and worrying about the health of 3 other older adults in the family? As a child you can’t not worry about your parents especially when it involves the ER, it’s only natural. A parent going to the ER is possibly one of the scariest thing a child can experience. On top of that, there are the worries about the out of pocket cost for care. The least we could get really is a decent healthcare system that can help care for older adults, and a geriatric ER will be a good start. In a Geriatric ER at least we know our parents are getting the right care from the start and in the right environment, that in itself will be a great relief from the get go.

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We’ve all heard of the Chinese proverb:

“The superior doctor prevents sickness; The mediocre doctor attends to impending sickness; The inferior doctor treats actual sickness”.

A cultural change in care requires collaboration and evidence, and the success of early intervention will reduce the operational and financial strain on the health and social care system. Isn’t it time, for the hospitals in Asia that can make a change start doing something about it and adopt a salutogenic approach to care? Isn’t it time we start taking our own advice?

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Singapore’s Dementia Friendly Community: Forget Us Not

Singapore has a Dementia Friendly Community in Yishun, this is a joint awareness initiative by Lien Foundation and Khoo Teck Puat Hospital. The campaign is known as  “Forget Us Not” the campaign. The website is available in both English and Chinese. A good resource for all Asians to check out to gain some basic knowledge about dementia.

For people overseas this may be a good resource if you are working with an Asian client or for people living in Asia, this may be a good resource to share with your clients to have them understand more about dementia. It’s simple and easy, with short write-ups and visuals to help bring the message across.

Visit their website: Forget Us Not – Home

Singapore Member of Parliament speaks up on alternatives to Nursing Homes

It’s good to see that even members of parliament are getting involved in the conversation of improving the care of people with dementia in Singapore. MP for Tanjong Pagar GRC Dr Chia Shi-Lu spoke up in Parliament citing that new models need to be explored especially for people with caregivers. Dr Chia also recommended that partnerships with foreign institutions and industries should be carried out.

Read more about the straits times article below.

Traditional nursing homes may be excessive for some residents, while studies have shown that restoring the autonomy of the residents has many positive effects on their well-being, says the MP for Tanjong Pagar GRC in Parliament.

Source: More alternatives to nursing homes needed: Dr Chia Shi-Lu – Channel NewsAsia

A Better Way of Looking at Dementia Care in Asia: The 4 Big Zeros

This is pretty amazing, a models of care from an organisation providing care in Japan. This is just incredible, it’s just so simple and functional.

At first glance, it looks confusing, like what? 4 big zeros? Zero wheelchairs? What does that mean? That the organisation don’t provide wheelchairs?

image from http://www.sompocare-next.jp/

4 zero is a really outstanding care philosophy, to ensure that the organisation work towards the physiological and mental health of the resident to ensure that their independence, dignity and autonomy is maintained as long as possible. So much so that until the end of days they will never have to live with diapers, assisted baths, tube feeding or wheelchairs.

1. Zero Diapers/pads

2. Zero Special baths

3. Zero Tube feeds

4. Zero Wheelchairs

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That really sums up the care that we need to provide to ensure that the people with dementia have a great quality of life. Too often we take it for granted that it’s okay for people to wear diapers/pads, to have assisted baths, to be on feed tubes and to grow old is to literally lose your mobility. Be it a home care service, residential aged care, or in acute care, that’s what we all should be aiming to help everyone live better. To ensure that people living with dementia can live healthy, respected and meaningful lives without the added pain, humiliation and anguish that we so flippantly systematically introduce into their lives.

Residents have told me that they are uncomfortable, humiliating, and some have even felt the need to become reclusive, as they are conscious that their pads or diapers may smell. This is awful for a person’s well-being. Living with dementia, it’s stressful enough to ensure that each day is lived to it’s fullest, to remember to do the things that they need to do. On top of that having to wear, change and walk around with a diaper or pad, really is one of the last things anyone really needs. Zero Diapers/Pads!

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As a child, can you remember getting your body scrubbed and being twirled around to be mopped up in the shower. Like a military exercise, the shower never comes on when you want it and it’s always too hot or too cold. Think of the dances that you did and the anxiety it brings trying to avoid that first blast of water. The pelting of water smacking into your face when you least expected it. Lots of scrubbing and before you know it, it’s all done and you are bundled out faster a bag of groceries at the supermarket at lunch time.

Some people rally appreciated their showers, they sing in the shower, play with the foam in their hair in the shower, and just sometimes after a long day which feels like the end of the world, they may just stand in the shower with the water streaming down on me in silence. Just listening to the sound of the water, enjoying the calming warmth in serenity, it’s much needed especially after a rough day.

Having assisted baths are just not the same, and for anyone who has showered a resident. Residents have mentioned that they don’t care anymore and for some it is frustrating and they get annoyed especially if they get a different person helping them with their shower that they may not be familiar with, and rightly so. Imagine having a stranger seeing you naked or scrubbing you, or standing in the room watching you while you try and enjoy a warm shower. We should try and help people to maintain their independence and mobility as long as we possibly can, so that for everyone who enjoys a nice hot shower by themselves in private, they can keep rocking on. Zero Special/Assisted Baths!

Imagine never being able to eat. Food is the breath of life, from the moment of birth we taste the sweetest of milk, we lick the salt off the palm of our sweaty little hands and as we grow, continue to enjoy the luxurious experience of having a meal. We open our auditory perception to the vibrators around us, to the sound of chewing in our mouths, the crackle and pops, the slurping, chomping of meat and vegetables, the crunching of chips. We open our senses to a world of gustatory perception, from the sweetness of honey to the heat of the beloved bird’s eye chillis from Southeast Asia. Our 5000 taste buds activating their 100 taste receptor cells, kicking themselves into action, working hard to make each meal an adventure (Siverthorn 2007). When the odorant molecules creep towards us and bind themselves to our olfactory receptors, we can’t help but take in the information that these little molecules have given us and up the glomerulus, the information is sent, right into our olfactory bulb that helps us make sense of the delight close by. They say we eat with our eyes, and watching chefs like Jamie Oliver put together a feast before us, some say it’s almost as good as having the meal in itself. Let’s not even talk about the tactioception, the spring of a baked muffin out of the oven or themoception, the cold of a vanilla ice cream, or the warmth of Ramen on a winter’s afternoon.

Kuraoka & Nakayama (2014) stated that common causes of issues that might require percutaneous endoscopic gastrostomy (PEG) where a tube runs pass the mouth and through the adomon to deliver contents the stomache include;

  • inability to independently have their meals as a result of cognitive deterioration
  • loss of interest/appetite in having their meals as a result of depression or poor mental health
  • damage to nerves and muscles required for the eating and swallowing in the event of stroke

Research (Taylor et al 1992), found that up to 70% of people with PEG will encounter complications ranging from minor to severe with survival probibility of 1.5 years to 4 years after referrel. Increased risk of death was also stated in the study and it was stated that individuals with people with low risk of survival will not benefit from having a PEG. A multitude of ethical issues that arise from PEG includes the stress and frustration that caregivers feel to have to make decisions regarding their loved ones being on PEG and most of these decision-making procession may only range for a few minutes, forcing caregivers to make an on the spot decision regarding this critical issue (Kuraoka & Nakayama 2014).

We should do our best to keep older adults, happy, healthy and independent and not flippantly take the important issues for granted and have people live with PEG feeding tubes/Nasal Gastric (NG) tubes. Zero Tube Feeds!

Walk Cycle Vector

The last of all is a big issue and a lot of people grapple with nurses and caregivers alike. We are all afraid of our loved ones and residents falling, in Asia we are also attuned to over caring and being time poor it’s a lot easier for us to do things for others then to allow them to do it themselves with our assistance. We pride efficiency and timeliness at the cost of the independence for others. This however is not fully attributed to staff, Residents, families and clients have to be aware of these issues as well. They have to be aware of the issues that are tied to muscle atropher or disuse atrophy which occurs from loss of physical activity. It’s not uncommon to see a person after recovering from a fall, filled with intense anxiety and grappled with fear that they literally wake up, sit in a wheel chair and never find the strength to be mobile again. Some nursing staff may also have encountered residents who on top of not wanting to walk, insist on being pushed around in a wheelchair. Residents feel that they pay for their care and therefore they should be wheeled everywhere and should not lose out, as caregivers and families, do they realise that the emphasis on the dollar is impacting their cognitive and physical health resulting in their loss of movement?

Just the basic movement of walking, in the part to the bus shelter, getting up to grab a drink result in the activation of different muscle synergies and motor corticol regions in our brain. Each movement that we take for granted and carry out with ease sets off a blaze of neurons. Imagine walking in the garden or a park, feeling the sun on your face or the breeze, or the heat and humidity working up a sweat. We are surrounded by a constant ball of experiences, though little they make up a whole of how we conprehend and understand our bodies, mind and the environment around us. The simple things in life are lessons in itself. We know (Ahlskog 2011) that physical exercise is a critial cost-effective preventative element against dementia and brain aging, so why are organisations strapping their clients down and paying for programmes which may not have adequate evidence base in the preventative treatment of dementia and brain ageing?

We should be working towards enhancing, enabling and empowering people to be healthy and fit, to help them maintain their independence, autonomy and mobility in an inclusive environment. Zero Wheelchairs!

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We have the obligations to provide good care for the people around us, to maintain a sense of harmony and homeostatis to keep our inclusive and complex society moving. Putting the needs of fulfilling black and white key performance indicators that provide quantitative information without any qualitative outcome for the people we are meant to care for is no outcome at all. What does it mean to give a part of ourselves and our time to pursure the more important and meaningful things in life and not just keeping up the numbers. Unlike the West, we were brought up with values that put the needs of society before our own, and we need to remember that and not pursue our own needs at all cost for our own brighter future at the risk of poorer health outcome for others.


 

References:

Ahlskog JE, Geda YE, Graff-Radford NR, Petersen RC. Physical exercise as a
preventive or disease-modifying treatment of dementia and brain aging. Mayo Clin
Proc. 2011 Sep;86(9):876-84.

de March, Claire A.; Ryu, SangEun; Sicard, Gilles; Moon, Cheil; Golebiowski, Jérôme (September 2015). “Structure–odour relationships reviewed in the postgenomic era”. Flavour and Fragrance Journal 30 (5): 342–361

Kuraoka, Y. & Nakayama, K., 2014. A decision aid regarding long-term tube feeding targeting substitute decision makers for cognitively impaired older persons in Japan: A small-scale before-and-after study. BMC geriatrics, 14(1), p.16. Available at: http://www.ncbi.nlm.nih.gov/pubmed/24495735.

Rana M, Yani MS, Asavasopon S, Fisher BE, Kutch JJ. Brain Connectivity
Associated with Muscle Synergies in Humans. J Neurosci. 2015 Nov
4;35(44):14708-16.

Silverthorn, D. U. (2007). Human physiology: An integrated approach. San Francisco: Pearson/Benjamin Cummings.

Taylor CA, Larson DE, Ballard DJ, Bergstrom LR, Silverstein MD, Zinsmeister
AR, DiMagno EP. Predictors of outcome after percutaneous endoscopic gastrostomy:
a community-based study. Mayo Clin Proc. 1992 Nov;67(11):1042-9.

Other sources: 私たちの特長 | SOMPOケアネクストの有料老人ホーム・介護施設


 

Disclaimer: Just to be clear the blogger does not work or receive any funding from the company or organization in this article.

The Link between Hoarders, Brain Damage & the Research

In Asia, you would usually see a case about a hoarder which is a common reference for a person living in severe domestic squalor. In most cases volunteers would have gone in to help clean up the home only to have it return to the same steady state a few months after.

Image from Chinanew.com (Elderly resident in Qing Dao accumulates items that blocks the apartment entrance.)

With our high-rise living 2 recent cases caught my eye, a 78-year-old lady sleeping in a stairwell in Singapore for 3 months as a result of the clutter in her home and an apartment in Shanghai, whose entrance has been completely blocked as a result of a single resident’s collection of items.

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Image from The New paper (TNP, Singapore)

A lot of the time, these situations leave us confused, especially after a big clean up, they continue to build up and reside in unsanitary and highly dangerous living conditions. It is not uncommon for colleagues or friends to say that the individual was well articulated and seemed well presented. So why do they continue to live in conditions that endanger their lives and others?

In a study by Snowden et al. (2012), one in 700 elderly living alone in the community may be living in these conditions. Research by Lee et al. (2014) in Australia found that people living in squalor were mostly living with brain damage that is impacting their ability to accept that their living condition was highly unacceptable in society. To answer the question about the well-presented individual, their research have also found that most of these individuals score well on the Mini-Mental State Examination (MMSE) indicating a level of capacity resulting in the ability to remain well-spoken and presented individual.

Having helped out in some of these activities, it was and still is in hope; that a lot of the residents who were residing in these living conditions did not have the physical means to clean up their homes. For many of us living in high-rise apartments with our parents and children, a lot of us tend to turn a blind eye and only start to care when it begins to affect our living environments. The usual situation is when we start seeing a rise in the number of cockroaches, a bedbug infestation, or the smell of rotting garbage. By then it is too late.

In addition to the community, Sutherland and Macfarlene (2014), touches the inability of psychiatrists to view this as a psychiatric issue and yet psychiatrist are the key individuals that can assess and prescribe appropriate strategies.

Sutherland and Macfarlane (2014) advise that in these situations practitioners really only have 2 options.  To intervene against the wishes of the person in question or do nothing. People could argue that this is highly paternalistic, some may say prescriptive. However, when the situation may pose a risk of harm to the individual and the community living in these high-rise communities, can you really turn your back on the situation?

Some of us may risk inaction out of respect for the individual. We may not want our neighbours to “lose face”, we may want to be polite, to keep the peace or for some of us, we just haven’t had the time to look, and for a minority of us, we may not care.  to contact our local MP or town council for help; we are in fact abandoning these individuals as a society and putting everyone’s lives in jeopardy, their lives and our own. These environments are a huge fire hazard, in addition to the contributing unsanitary conditions when we allow bedbugs, cockroaches and other insects to spawn when we could have acted early and provided the right care for our neighbours and reduce the risk of harm to everyone.

“Our services should act in the best interests of the person where possible while bearing in mind the interests of others. When capacity is in doubt, decisions about intervention may be debatable. It may be easier to do nothing. Recognising our responsibilities, even if they distress us, is necessary. If we find the job impossible, it is important to refer to people or services who can take on the case (Snowdon, 2014, p682).”

These individuals are who may be found with diminished capacity may be able to be managed by services such as home help/care and other community services (Sutherland and Macfarlane, 2014). The researchers also suggest that in extreme cases, guardianship may e necessary. The person could be cared for in a residential home with clinical care such as an aged care home.

In the event that we may have seen such a situation, we should contact our local MP or town council for help. By remaining inactive, we are in fact abandoning these individuals as a society and putting everyone’s lives in jeopardy, their lives and our own. These environments are a huge fire hazard (Pending Road), in addition to the contributing unsanitary conditions when we allow bed bugs, cockroaches and other insects (Eunos Cockroach Infestation) to spawn when we could have acted early and provided the right care for our neighbours and reduce the risk of harm to everyone.

Video posted by Nur’Ashikin Fazlan Zainol on facebook.

By including the safety and lives of others in our daily lives, we include the safety of our family.

 

References:

Lee, S., Lewis, M., Leighton, D., Harris, B., Long, B., & Macfarlane, S. (n.d). Neuropsychological characteristics of people living in squalor. International Psychogeriatrics, 26(5), 837-844.

McDermott, S., Linahan, K., & Squires, B. J. (2009). Older People Living in Squalor: Ethical and Practical Dilemmas. Australian Social Work, 62(2), 245-257.

Snowdon, J., & Halliday, G. (2012). A study of severe domestic squalor: 173 cases referred to an old age psychiatry service. International Psychogeriatrics, 23(2), 308-314.

Snowdon, J., & Halliday, G. (2009). How and when to intervene in cases of severe domestic squalor. International Psychogeriatrics, 21(6), 996-1002.

Snowdon, J. (2014). Severe domestic squalor: Time to sort out the mess. Australian & New Zealand Journal Of Psychiatry, 48(7), 682.

Sutherland, A., & Macfarlane, S. (2014). Domestic squalor: Who should take responsibility?. The Australian And New Zealand Journal Of Psychiatry, 48(7), 690.

 

 

10 Tips for Communicating with a Person with Dementia 

A really practical and simple article with tips from the Family Caregiver Alliance for staff and caregivers working with people with dementia. The article provides advice on communication and understanding changes in behaviours. With additional information on supporting a person with dementia to manage nutrition, hygiene, and incontinence.

I found the top 10 tips for communication very helpful and made a little facebook post sized image to help share these very practical caregiver tips with friends and colleagues. You can also print it out and pin it on the pinboards at the nurses station.

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These tips are just straightforward and realistic, and transcend the boundaries of culture and language.  I made some changes and replaced the word dementia with cognitive impairment because I thought the nurses on the neuro wards, or even care managers working with people with traumatic brain injuries may also find these tips very handy.

Source: Caregiver’s Guide to Understanding Dementia Behaviors | Family Caregiver Alliance