Dementia Friendly Communities

 

Dementia-Friendly-Communities

I recently had the pleasure of leading a discussion at the University of British Columbia’s Interdisciplinary GERO Graduate Student Reading Club. This club consists of a handful of students ranging in educational levels from undergraduate to post-doc in the disciplines of nursing and aging from both Simon Fraser University and the University of British Columbia. In both Nursing and in Gerontology we are well aware that the population is aging and that dementia is a huge health concern (“WHO | Dementia,” 2012). I asked the group to read two articles on a topic I am pretty into lately: Dementia Friendly Communities. The first paper I chose was an empirical piece from Lin and Lewis (2015) which compared thirteen National Dementia Strategies from across the world. The second piece was a report released from Alzheimer’s disease International (2015) showcasing examples of successful grass-roots dementia friendly community initiatives.

The combination of nursing and social sciences backgrounds pushes us out of our academic comfort zones and helps us have a rich and engaging discussion about Dementia Friendly Communities. The seminar began with a conversation around what a Dementia Friendly Community actually looks like in practice. We reviewed the national dementia strategies outlined in Lin and Lewis (2015) and the importance in ensuring these policies have a Dementia Positive component to them when they are implemented. Dementia Positive is a concept that simply means a person with dementia is capable of living a positive meaningful life. Lin and Lewis (2015) elaborate Dementia Positive by saying that, just like anyone, a person with dementia has both strengths and weaknesses. They are unique, dynamic and changing humans, and our national policies must reflect this. Without addressing the possibility of becoming a Dementia Positive (or Dementia Friendly) community we are merely living in a pseudo-inclusive society that accepts and takes care of all members of it’s society but does not treat them as equals.

We discussed some of the possible implications for attempting to accept and normalize dementia, with such initiatives as Dementia Friendly Communities, while still searching for a cure.  Referring to the ambitious goal from the G8 Ministers of Health to find a cure or disease modifying therapy for dementia by 2025 (“G8 dementia summit declaration – GOV.UK,” 2013).  Already, dementia and cognitive impairment are the leading chronic disease contributors to disability and dependence among older people worldwide (“WHO Governments commit to advancements in dementia research and care,” 2015).  We also ended the seminar with a conversation about  ethno-cultural differences in understanding dementia as well as dementia friendly communities. All together a very interesting discussion and I look forward to attending Gero Reading Club next month.

This post is a re-post from the Gerontology Nursing Blog from the University of British Columbia: http://gero.nursing.ubc.ca

 

References:

Alzheimer ’s disease International. (2015). Dementia Friendly Communities: New domains and global examples (pp. 1–13). Retrieved from http://www.alz.co.uk/ADI-publications#dfcs

G8 dementia summit declaration – GOV.UK. (2013, December 11). Retrieved August 16, 2015, from https://www.gov.uk/government/publications/g8-dementia-summit-agreements/g8-dementia-summit-declaration

Lin, S.-Y., & Lewis, F. M. (2015). Dementia Friendly, Dementia Capable, and Dementia Positive: Concepts to Prepare for the Future. The Gerontologist, 55(2), 237–244. http://doi.org/10.1093/geront/gnu122

WHO | Dementia: a public health priority. (2012). Retrieved August 16, 2015, from http://www.who.int/mental_health/publications/dementia_report_2012/en/

WHO | Governments commit to advancements in dementia research and care. (2015, March 17). Retrieved August 16, 2015, from http://www.who.int/mediacentre/news/releases/2015/action-on-dementia/en/

 

Dementia in the Village and at the W.H.O.

Booi Bella Bella Elder's Building 12.14.14

Canada does not appear ready for its aging population and by no means are we prepared for the increase in dementia that comes with an aging population. This story remains the same for Canadian’s in the most remote and rural communities as well as its most populated cities. I recently had the privilege of completing an internship position observing dementia care in the Elder’s Building on the beautiful First Nations community of Bella Bella.  This village is located on the east coast of Campbell Island in the Central Coast region of British Columbia. It is home to 1,400 people, predominantly from the Heiltsuk Nation. I had a tiny glimpse into what dementia care in remote communities may look like and how dementia impacts the whole village.  The people of this village shared some of their challenges and pain with me, and truly broadened my understanding of what community and institutional dementia care currently looks like in remote settings.

I am by no means an expert in these unique issues but it is definitely an experience that enlightened and further motivated me to work toward empowering all peoples in positive dementia care, and to bring a broader awareness to the crippling lack of support for dementia care in our small and isolated communities across Canada. We know very little about the prevalence and incidence of dementia in Aboriginal communities in Canada but we know that, as with the Canadian population, dementia is an emerging health concern and that in order to best support these communities’ responsive policies, programs and care need to be geared specifically to First Nations.

After my time in Bella Bella myself and a number of other representatives from the Young Leaders in Dementia Network were invited to participate in the World Health Organization’s First Ministerial Conference on Dementia this spring in Geneva, Switzerland. At this event ministers and experts in research, clinical, NGO communities and advocates from over eighty countries came together to discuss the global problems posed by dementia. The main objectives of this conference were to increase awareness of the public health challenges posed by dementia, and to emphasize the need for all countries to implementing national strategies.

Booi at WHO Conference on Dementia 03.16.15The World Alzheimer Report (2013) estimates that by 2050, the total number of dependent people worldwide will nearly double from 349 million to 613 million, but the numbers of older people with need for care will nearly triple from 101 to 277 million.  In 2010, the total global societal costs of dementia were estimated to be $604 billion! This corresponds to 1.0% of the worldwide gross domestic product. Despite these grim numbers some really cutting edge and progressive things are happening in Canada regarding dementia related issues. For instance, Alzheimer’s Canada has just launched our first ever national dementia awareness initiative: Dementia Friends Canada (www.dementiafriends.ca).

Another exciting progression on the local, grassroots level are engaged citizens taking dementia related issues into their own hands by becoming Dementia Friendly Communities. One great example of this is Qualicum Beach on Vancouver Island. This town has the oldest population in all of Canada (their average age is 64!) and they have committed considerable resources toward the goal of becoming the most dementia friendly community in Canada.

Canadians have a lot of work to do, but we have already taken some great steps to raise awareness and help those with dementia but there is still huge amounts of work to be done and we must ensure that those in the most rural of settings, such as Bella Bella are included in our progress. Dementia is not discriminate and neither can we be in our search for solutions.

World Dementia Council article about Young Leaders in Dementia at the World Health Organization: https://worlddementiacouncil.wordpress.com/2015/03/16/global-young-leaders-present-recommendations-for-future-work-of-world-dementia-council/

 

 

 

 

Elder Abuse in Residential Care

WARNING: This clip is graphic.

This topic sits near and dear to my heart. I imagine, if you have stumbled across Dementia Health then elder abuse also strikes a chord in your heart. Firstly, let me make very clear that this is not the norm in long term care facilities. Sadly though, this is a common occurrence. If you were daring enough to watch the suggested clip, I thank you. Those images are not easy to watch, nor are the necessary to understanding the importance of this situation. They are reminders, to myself and maybe to you too, why it is important to advocate for those who can no longer advocate for themselves.

Older adults in residential care compromise one of the most vulnerable populations due to their physical disability and cognitive impairments. In spite of long-term efforts, it has been difficult to ensure quality of care for this vulnerable population. Studies continually show that between 60-90% of residents in long-term care have some form of dementia. The problem concerning abuse in long-term care is that nobody actually knows the prevalence of it. I have poured over articles and books and good grief, nobody will come out with actual numbers. What we do know is that the information we do actually have on abuse in long-term care is grossly under reported.

Who are the perpetrators? The abusers are not always overworked, exasperated, or malicious staff members. Often, abuse is from other residents. A recent study reported that almost 1 in 20 residents in long-term care are abused by another resident. In fact, in Canada, this year alone, 5 residents in long-term care facilities have been killed by other residents- all of whom had severe forms of dementia! That being said, abuse does not always take the form of physical violence. Neglect, verbal abuse, financial abuse (ect. theft), sexual abuse, abduction and other violation of rights are also considered forms of elder abuse, all of which can occur in long-term care.

I do not believe there will come a time when long term residential care will not be needed. Because of this we are forced to come to terms with the fact that institutionalization in old age may be a reality for many of us- it probably already is for someone you know and love. My own Grandpa was just placed in a long-term care facility this year and just this month was assaulted by another resident. A women with dementia came up to him in the dinning room and punched him right in the face! Jesus. This type of news is aggravating enough to get even the calmest of family members to loose their cool and want to take arms in revolt. But revolt against what?!? The whole system of long-term residential care? A specific nursing home? An individual care aid? Perhaps sometimes direct action like that is needed, like in the case of the clip above, but in the meantime, here are some suggestions I have for you to safely and effectively advocate for your loved one who is living in long-term care:

  1. Make friends.Take the time to get to know the regular care staff helping your loved one. There is going to be a lot of different nursing staff members but try to meet some of the regular ones. This entails spending time at the facility, getting to know some names and maybe even telling some jokes?
  2. Be helpful. Ask to help the care staff with their tasks in caring for your loved one. Can you help make their bed in the morning or give them their meals in the evening? Anything you do that shows you are their to help will translate to better care and an overall better living experience for your family member.
  3. Be understanding. The nursing staff are NOT your enemy. They are working in a system that is working against them. Ask them about it (if they have time), they are probably caring for 5-15 other residents and juggling a million specific requests from concerned family members just like you. Remember, they are doing their best. Do not be on the offensive with them, they are on your team.
  4. Get loud. The squeaky wheel gets the grease! The nursing staff hears your concerns but you know who will hear your concerns even more clearly and who has the power to implement the changes you want… MANAGEMENT! Leave the front-line staff to their jobs, talk up the chain of command if you want to get some serious results. Email, phone call, face-to-face meetings. I know I am losing friends in healthcare  by posting this but really, this is your best option to ensure that EVERYONE in the facility knows who your loved one is and that you are watching their care like a hawk (a loving and understanding hawk though, right?).

Do you have other suggestions for ensuring quality care in long-term care? Please let me know and I will update this list pronto.

FREE Dementia Course

dementia-mooc

I have noticed that there is NOT a great deal of dementia info out there AND the information that is free is NOT always correct. That’s real bad news. Will you please join me in taking this free online course? It’s for anyone who gives a sh!t about dementia. The good folks at Johns Hopkins University have given me the thumbs up to disseminate this info to you, so here we go:

This course offers foundational knowledge and thus is appropriate for health professionals, students, families and persons in the early disease stages (so that means basically everyone).  They want to make sure that global participation of dementia discussions are much more enriched- that means people like YOU and ME are involved. Do you hear what I am saying? If you have a pulse, can read, and have access to a computer, PLEASE come take this course with me.

But Wait, Oh God- what about COMMITMENT?

Commitment problems? Oh, I hear ya. But have no fear, the course itself has a pretty mellow commitment level with only 3-5 hours a week for 5 weeks. Seriously, I spend more time thinking about what I should watch on Netflix. YOU CAN DO THIS! Come! I will be there! We can swap notes and make jokes!

Okay, here’s the link so you can check out the real facts and register: www.nursing.jhu.edu/dementiacare

Thanks for your interest.

Dead At Noon

RIP Gillian Bennett

RIP Gillian Bennett

On Monday morning Gillian Bennett and her husband dragged a mattress outside to her favorite location- outside, under the August sun. She downs a few drinks of whiskey and a heavy dose of Nembutal. She purposefully has chosen to take her own life, with her favorite person, her husband of 60 years holding her hand by her side.

While she still had all of her cognitive capacities Gillian created a website- a cry out to the public www.deadatnoon.com. In this website she writes passionately about the need for physician-assisted options for the terminally ill and elderly. Gillian decided to end her life the way she had lived it- with grace, courage and curiosity. She spent her final weekend alive with her son, daughter and husband at her beautiful home on Bowen Island, British Columbia. Her family was aware of her plans to end her life on Monday. They loved her and supported her decision.

As a society we have a HUGE  task at our doorsteps and I would like to argue that there are two big discussions that need to be had.  Gillian has helped these discussions come out into the forefront. Firstly, Physician assisted suicide, death with dignity- what is our society going to do to help those who are dying? Gillian outlines options in her beautiful last piece of writing at www.deadatnoon.com. Secondly, why is it that Gillian believed that dying was a better option that living through the dementia trajectory? Perhaps if we lived in a society where we had better systems put in place to assist and care for those with dementia, death would NOT have seen like the best option?

Thank you to the Bennett family for sharing Gillian’s story with us all.

STOP Fighting Dementia?

stop fighting

Most of the propaganda against supporting Alzheimer’s disease we and people with dementia surrounds the notion of “Fighting Dementia”. Even the Alzheimer’s Society’s slogan is “Leading the fight against dementia“. Can we please get over this ‘fighting’ language? This type of language is part of a larger belief that it’s a good idea to fight against things we don’t like- and we definitely don’t like dementia. Fighting is one of the biggest energy drains we can ever take on and by using this hostile language we are setting ourselves up to further disenfranchise the very population of people we are trying to help the most- those with dementia.

And seriously, we are not Fighting dementia. We are working are damnedest to find pharmaceutical solutions to prevent and cure dementia. And front-line health care providers are not ‘fighting’ they are delivering the best care they know how to within a system that is riddled with errors. This isn’t a anti-bullying campaign and this isn’t an us-versus them scenario so let’s change the wording around these ideas so we can move on to the meat of the issue.

Individuals with dementia already report feelings of disenfranchisement and alienation based on their diagnoses. For the love of god, let’s not make their situations any more difficult because of the terminology we choose. It is possible that perhaps I am just being super nit-picky with my wording but how we describe our campaigns effects the directions they take. Let’s not further the disenfranchisement and alienation people who have been diagnosed with dementia already experience.

A solution I really really like is screwing the whole “Fighting Dementia” lingo and instead using “Dementia Awareness”. A couple organizations (Alzheimer’s Scotland and Alzheimer’s Association UK) have already adopted this for some of their campaigns. I know ‘Raising Awareness” isn’t as punchy as “Fighting dementia” (tee hee hee- that was a pun!) but raising awareness for dementia related issues is truly the majority of our cause! It is through this awareness that more funds will be allocated to pharmaceutical research and proper healthcare education for our front-line staff. And that is my two sense on that topic. What do you think? Do we want to Fighting Dementia or Increasing Awareness?

dementia awarenews

 

Aging Questions from Grade 6

An exceptionally bright Grade 6 student names Lucas recently emailed my Gerontology Department with some very thought provoking questions regarding aging. I know this isn’t technically a dementia post but it all has to do with aging.

What do you think the maximum age limit of a human being is?

The oldest living person in Canada is actually from British Columbia like us! Her name is Mrs. Merle Barwis, she was born in 1900 making her over 113 years old! The oldest person in North America is Jeralean Talley, she lives in Georgia and is over 114 years old today. On average though, humans don’t live as long as Mrs. Barwis or Mrs. Talley. The average life expectancy in Canada is 82.5 (80.4 for males and 84.6 for females). That really makes you think eh? We have so much time in our lives! What are we going to do with it all?

 What makes a human being die from old age?

Well, there are two main theories about why people die from old age. Let me give you both and you can pick which one you like: a) In the first, the idea is that our genes determine how long we live. We have a gene or some genes that tell our body how long it will live. If you could change that particular gene, we could live longer. b) The second theory is that over time and with the wear and tear of life, our body and our DNA get damaged until we can no longer function properly. The idea here is that how long we last is really just a consequence of small changes in our DNA. These changes add up until the total amount of damage is too much to bear and we die.

 What are some things that can maximize a human being’s life span?

In my opinion as a Gerontologist there are three main things that impact our life span and they all have to do with how we treat our bodies: a) What we put in our bodies. Eat healthy! This one is a challenge for me but too but try      to get away from junk food and eat healthy foods like vegetables and fruit to live as long      as possible. b) Who we do with our bodies.  Do your best to keep fit and active! Get outside to play        and exercise every day. c) Who we put near our bodies near. Social relationships are essential to a long-life! They          are one of the ‘forgotten’ aspects of healthy living. Spend time with people you love and      who love you (friends and family) and it will positively impact your life and wellbeing.

 What makes a person “old”?

This is a tricky question Lucas! By definition a person is considered ‘old’ once they have entered the later part of their life- after the period of youth and middle age has ended. Some people define ‘old age’ as 55, 65, 76 or even 80 years and greater! Here in Gerontology, we usually use 65 years as the cut off for older adults. We never call people ‘old’ though- even if they are 105! “Old” is a social construct rather than a definitive biological stage of life. We use ‘old’ to help us define a certain type of person, usually one who has lived longer than us.  I once interviewed a man in a nursing home who as 93 and in my own mind I thought that he was old (I mean- he was in a nursing home!) but after talking with him he told me how he hated being around all of these ‘old people’ (meaning the other residents of the nursing home!). He didn’t think of himself as old at all and was offended that I had the nerve to imply he was old! ‘Old’ is a subjective state of being- it is up to the individual to decide if they are old or not. For instance, some days I feel very old (like right before a big assignment is due at school) and other days I feel very young. Maybe you are the same?

 Will the life expectancy increase in the future?

A great many brilliant scientists are also interested in the answer to this question. Has human life expectancy reached the ceiling or is the sky the limit for us? In the past century the human life expectancy for most of the planet has almost doubled! The big question is now whether these increase will continue or whether human longevity (simply meaning how long we get to live) is approaching its limit. Some scientists believe that average life expectancy has already peaked at 85 years, others forecast a peak at 100 years and still others say 110 years! But thus far, the answer is that the data we have on the limits of human life expectancy is inconclusive. I guess we will just have to wait and see what actually happens.What great questions Lucas! If you have anything to add to my answers please do so in the comments below.

Buffy

I often find that Alzheimer’s disease gets so much attention that people are sometimes unaware that dementia rears its ugly head in many age related disorders. A few weeks ago I went to my friend’s home and met his mother, Buffy, a very Scottish 74 year old with a warm handshake and a great laugh. It was Robbie Burns day so, of course, there was plenty of Haggis and Scotch to go around. Buffy has Progressive Supranuclear Palsy (PSP) and in five years has gone from beating her daughter in tennis to needing assistance walking across the room.

Mom with PSP and her son

Buffy and her son

Buffy’s trajectory through PSP is not an uncommon one. PSP l affects 1:100’000 people over the ages of 60, that’s approximately 20’000 people in America alone. These numbers are thought to be hugely underestimated because PSP is often misdiagnosed as Parkinson’s. One of the classic signs of the disease is an inability to aim the eyes properly, which occurs because of lesions in the area of the brain that coordinates eye movements. Individual’s with PSP eventually lose their ability to read, write, eat properly, dress and, of course their balance is seriously effected and they eventually cannot perform basic activities of daily living without assistance. Symptoms of mild dementia are found to be prevalent throughout the course of the disease and get more severe at the later stages.

Buffy’s first characteristic of PSP were her falling. She would lose her balance at unusual times and stumble over herself. Her children and her husband noticed this and eventual a diagnoses af PSP was given from a medical professional. One of the main issues with PSP, along with other less common forms of dementia is the lack of support and education provided to the public. There is a general lack of support groups for caregivers devoted to PSP and the general public, as well as the vast majority of healthcare professionals also don’t know about this disorder. For example, when Buffy spent a stint in a long-term care facility she often felt ignored by staff and residents. They thought that because of her inability to speak or move quickly she had severe cognitive impairment, when really she was completely cognizant to what was happening around her she just needed more time to get her words out.

Like Buffy, individuals who have PSP lose their balance often and one of the main concerns is falls. As Buffy’s daughter explained to me, ‘it’s not if Buffy is going to fall and seriously hurt herself- it’s when is she going to fall and will someone be around to help her?’ It seems that another fall is inevitable for Buffy and in this way caregiving for those with PSP is similar to other forms of dementia- it’s a 24 hour job of both direct care and surveillance, most often taken on by the person closest to them.

In Buffy’s case, Ian, her husband of 53 years, is her devoted caregiver. Ian, a tall, athletic and equally Scottish man ensures that Buffy’s needs are met and that she is safe and surrounded by friends and family. The time is coming though, when Ian will no longer be able to take care of Buffy by himself and placement in a long-term care facility, with 24 hours surveillance and access to medical attention,  may be necessary to ensure her safety. This isn’t a decision anyone wants to make but it is the reality of dementia care in our communities. Thankfully for Buffy, she has the love and support of her children and her husband to help guide her through the healthcare system to appropriate care. I hope I have the opportunity to meet Buffy again, she is a real live-wire and any facility would be lucky to have her among their residents.

Seth Rogen – Man Child turned Alzheimer Activist

Seth Rogen

Seth Rogen

There are now even more reasons to love this young comedian. I initially loved him for his role in this Pineapple Express- as s a 25-year-old process server and stoner but now I love him for his activist work with Alzheimer’s disease. Mr. Rogen appeared before the Senate Appropriation Subcommittee on Labor, Health, and Human Services to convey how he and his family has been affected by Alzheimer’s disease. Seth’s mother-in-law was diagnosed with early onset Alzheimer’s at 55 and left her unable to look after herself.

“I started dating my wife Lauren nine years ago when her mother was almost 54 years old. It was during this trip, the first time I met my now mother-in-law, that Lauren first admitted to herself and then to me that something was off with her mother,” he said.

“Soon after this trip at 55 years old Lauren’s mother was diagnosed with early onset Alzheimer’s.”

“After forgetting who she and her loved ones were, she forgot how to speak, feed herself, dress herself, all by the age of 60.”

Despite the lighthearted nature of his initial comments, Rogen quickly turned to how Alzheimer’s had affected his family’s life, although some humor made its way into his later comments on such a serious topic.

Alzheimer’s disease needs more champions and what an unlikely one we find in the “Knocked Up” star. In one hilarious and touching presentation Mr. Rogen has managed to pull generations together to bring light to a topic that has been swept under the carpets as an ‘old age’ issue. His video has gone viral in 48 hours- with over 3 MILLION VIEWS!!

Dementia’s, especially early onset Alzheimer’s disease needs this attention. For far too long, Alzheimer’s has been wrongly categorized as “an old person’s disease” and it’s time for a change. With the rapid rate at which the disease is growing, it’s time to get the younger folks, who will be the older folks before too long, involved.

Congratulations Seth. Your jokes about weed and sex have been hugely successful but may you count your activism work on Alzheimer’s disease as your most valued contribution to society. Thank you and we look forward to seeing more of your work on this issue.

Dementia or Alzheimer’s Disease?!?

dementia brainOne of my pet peeves is when people say things like  “My mom had dementia and Alzheimer’s disease”. People, please. This may be super pretentious of me but if there is only one thing that anyone, ever, gets from this blog it’s that dementia simply describes a serious decline in one’s mental capacity most commonly in memory, problem solving, attention  and language. The main symptom of Alzheimer disease is dementia. Please. Please. Please. Don’t say Alzheimer’s disease and dementia. That’s the equivalent of saying “I have a migraine and pain in my head”. Noooo!! Don’t do it!

That being said, there are many different diseases and ailments that can lead to dementia. Alzheimer’s disease is so popular, in my opinion, because it is a cluster-fuck of different types of dementia’s. The medical community doesn’t know yet exactly what causes Alzheimer’s disease or what symptoms are Alzheimer’s disease. It can only be diagnosed as ‘probable Alzheimer’s disease’ until post-mortem where they can take a look at the composition of your brain.

Another interesting thing I want to write about sometime is delirium. Delirium is like dementia but it last for a shorter period of time. For a diagnoses of dementia it should last for at least six months. Delirium on the other hand can last for minutes up to months.