Project: Alzheimer’s Project

It is wednesday and today I look into projects that focus on dementia or then, alzheimer’s. today’s project is very fittingly called Alzheimer’s project located in tallahassee, florida, us.

History of Alzheimer’s Project

Alzheimer’s Project, Inc.’s focus is to provide: 

 “assistance to caregivers of persons with Alzheimer’s disease. By placing volunteers in patient’s homes, Alzheimer’s Project, Inc., is able to provide much needed respite for caregivers.

Respite time provides caregivers the opportunity to learn how to take care of themselves; whether they go to the grocery store, attend doctor’s appointments or take a nap for 3 hours, it is their time for themselves. Through the years Alzheimer’s Project, Inc., has incorporated support groups, counseling, educational opportunities, the Project Lifesaver Program and many more programs and social services for caregivers.

Alzheimer’s Project, Inc. proudly continues to provide ALL support services  to the Alzheimer’s community free of charge.”

According to their website their mission statement is:

Alzheimer’s Project, Inc. (AP) exists to provide comfort, support, and assistance to  persons with memory disorders and their caregivers in the Big Bend area.

Alzheimer’s Project, Inc. is a non-profit organization funded by grants and private donations. Alzheimer’s Project, Inc. is dedicated to providing relief to the caregivers of persons suffering from Alzheimer’s Disease or other memory impairments.  ALL services available to the caregivers are provided FREE of charge. The goal of Alzheimer’s Project, Inc. is to keep caregivers healthier, both physically and emotionally, to prolong the abilities of caregivers, and to delay institutionalization of the patients.

If you live in one of the above mentioned counties or know of someone who needs help in the Big Bend Region of Florida, why not contact them?

Alzheimer’s Project, Inc.
301 East Tharpe Street
Tallahassee, FL 32303

Phone: (850) 386-2778
Fax: (850) 386-2775

Interim CEO, CJ Weinman

If you have a project that you would like to share, please feel free to leave a comment.
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Attempts at creating a National dementia strategy for Nigeria

Alzheimer’s Dementia Namibia wants to publish the below letter for a number of reasons.

No 1 – We need to get the message out there.

No 2 – The struggle is so similar that it hurts.

And that is enough reason for us to help Rosetti Care in Nigeria. Please take time to read the below and help us to help them spread the word.

Dementia Nigeria

Attempts at creating a National dementia strategy for Nigeria

The Problem

I posted the article below on Facebook to jolt Nigerians into waking up and joining the rest of the world in the fight against Dementia (most seem to think that it is a “white man’s” disease!) The stigma is so entrenched, only two Nigerians ”liked” the posting, and only one Nigerian made a comment!

Lunacy, Witchcraft, and other Myths – what defines dementia in Nigeria


People acting out of the ordinary must be mad, or possessed by evil spirits and are therefore witches.  Mad people and witches are non people; they are ‘less’ than human; they are faceless vermin to be easily discarded.  Methods of discarding non people, lesser humans, faceless vermin: Friends and family dump them far away from home, somewhere they cannot be recognised or traced back to their roots. Places where they are nameless, faceless vermin, where they are either struck by fast moving vehicles and left to die with people passing by and doing nothing to help them; or where they are stoned/burnt to death as witches especially for talking to themselves and to people nobody else can see; or for acting irrationally. It only takes one person to point them out as witches for a crowd to quickly gather… and then there is no way of stopping the ‘mob justice’
Affluent families tend to lock theirs away from the community to avoid stigma. They pretend and tell friends or enquirers that their afflicted relative has travelled abroad, “gone away”. You see, madness and witchcraft are said to run in the family. Nobody marries into a family thus tainted and afflicted.

The Dementia Activist

For over two years now, I have been working hard raising dementia awareness in Nigeria mainly in order to remove the stigma and help persons with dementia and their loved ones understand the situation in which they find themselves. It is not easy living with dementia in any country, but it definitely is frighteningly fatal in Nigeria.

I had asked Alzheimer’s Society to roll their Dementia Friends programme (which is a huge success in the UK) into Nigeria as part of that initiative. After all Dementia is a global issue. I explained to them that the programme will slot in nicely into my Dementia Awareness plans for Nigeria, and that their training resources will provide current and added support. Of course, Nigeria will need to translate most of the resources into Nigerian languages (there are over 250), and put a Nigerian “slant” on them. After over a year of failed attempts at convincing the Alzheimer’s Society to go global with their awareness resources, I gave up, only to learn a couple of months ago that Canada and the Netherlands are now running Dementia Friends programme!

Prior to finding that out,  I had approached the global Purple Angel for assistance. I like the fact that it was founded and run by PWDs with direct experience of Dementia, which means other PWDs will relate easily with them. I feel honoured that they appointed me as Head of Operations, as well as an Ambassador of Purple Angel in Nigeria. In turn, I have so far appointed 15 Ambassadors (5 of these are professors, 3 are doctors and one is in the Senate) with 22 more in the pipeline. There are 36 States in Nigeria plus the Federal Capital Territory. The aim is to have one Ambassador each for each state and the FCT. This will ensure that not only will dementia awareness be raised all across Nigeria, but PWDs and their loved ones will feel they have some sort of local support no matter how minimal at the beginning. There is a plan to further divide the entire country into 6 or 8 zones with each zone having a Co-ordinator whose role it will be to relay feedback and to cascade updated training to their respective zones.

The Diplomat

Everything takes time in Nigeria! People here have expressed surprise at how fast we are moving. There is also our politics with capital P and small p. Too many tribal and societal issues. I don’t want to be seen to be prejudiced or “tribalistic”. People in high places who want in don’t have the time to go on campaign, and others have time but not the required access. Some States are embracing awareness faster than others, and it will be those slow ones that will complain later that they are being hard-done-by.

At the rate we are going, we will have more than one Ambassador in some States. I am mindful of ruffling feathers in those cases. So I have to ensure the multiple Ambassadors can work together, not against one another, otherwise the name Purple Angel might be damaged in the power struggle that might ensue. This is one of the reasons why I am advocating dividing the country into 6 or 8 non-political zones with each zone having a zonal co-ordinator. The hope is that the Nigerian government will very soon notice our activities and will want to claim it as their initiative, especially when the rest of the world asks what Nigeria has been doing about Dementia.

The Communication

The Nigerian Purple Angel Ambassadors have been holding events at physical locations as well as online, where we try to raise awareness and enlighten participants. We now have 4 Facebook pages dedicated to enlightening Nigerians on dementia related issues. The FB pages are: Dementia Nigeria, Dementia Care Society of Nigeria DCSoN (closed group), Purple Angel Dementia Awareness Nigeria, and Purple Angel Ambassadors Nigeria (private group). It is heartening to see the traffic on these FB pages, and the fact that most of the postings are regularly shared. This means that those who are still reticent in contributing to the discussions (due to stigma) are nonetheless sharing the information with friends and families.

I have also woven the our activities around such global events like, World Elder Abuse Awareness Day, Alzheimer’s Month, Mental Health Awareness, Mothers Day, Fathers Day, Children Day, etc. I host these events at my facility, as well as arrange for some marches through towns and villages. We take the opportunity to raise Dementia awareness at these events. We are gearing up for Nigeria to become a part of the Age Friendly Communities and Cities!

The Funding

I am rather proud that we have the interest that we have, bearing in mind that Nigerians are not normally known to be involved in projects that do not reward them financially. The Ambassadors know that this is purely voluntary with no wage attached, and yet they want in!

As I have demonstrated, it does not require millions of UK pounds, or unscrupulous individuals with begging bowls running to the rest of the world for handout to raise awareness in Nigeria. It just needs local people who are willing to spare some of their time and energy to keep the ball rolling. Although I must admit the fact that I have been funding all these activities out my own money.

The Nigerian Ambassadors we have at present have agreed on future plans to raise funds within Nigeria in order to better support PWDs and loved ones. The hope is that we can convince the Nigerian government to take on part of the funding sooner rather than later. For now, some Churches, Mosques, Schools and Colleges are allowing us free access to their facilities where we can have Memory Cafes. Some private hospitals have also given us the free use of their premises as well as their doctors and nurses for Memory Clinics. We are currently working on getting some of Nigeria’s billionaires to donate some residential facilities as well as outreach and support personnel for those who are destitute and who are trying to live with Dementia.

Not The End……..

Initiatives

IFA Member – International Longevity Centre Canada

 

The International Longevity Centre (ILC-Canada), situated in the University of Ottawa, Faculty of Health Sciences, is an independent think tank with a focus on proposing ideas and guiding policy to address population ageing based on international and domestic research and practice.

 

ILC-Canada is concerned with a range of issues; however has particular interest in the area of health and long-term care and pays close attention to groups at risk.

 

Learn more on the ILC-Canada Website.

World Elder Abuse Awareness Day, Ibadan – June 15 2015

 

To commemorate World Elder Abuse Awareness day on 15 June 2015, Rossetti Care in association with Dementia Care Society of Nigeria and Dementia Nigeria teamed up with a local primary school to demonstrate the importance of older adults in a way that was both educational and fun for all.

 

“Growing up in Nigeria in the 60s the idea of elder abuse was inconceivable.  But times change and in the hustle bustle of our fast developing nation some of the older adults are being left behind, neglected and ill-treated.  This is a 21st century reality that needs to be addressed in Nigeria and throughout the world.” – Dementia Nigeria

 

Read more about WEAAD, Ibadan 2015 here.

The Story of Chief Petrus (5)

The Story of Chief Petrus

At the end of our research trip (2014 Review – Part 4) we stopped at Okahandja’s Craft market so that Susanne could buy a few souvenirs.

As Susanne ‘shopped’ I told the owner of the stall, Black Jack, who we were and what we did. He immediately said that this sounds like this sounds all too familiar. He called Chief Petrus, who opened these stalls 35 years ago. As we talked to Chief Petrus, I noticed that his right hand made uncontrolled movements and that he licked his lips as he spoke. Unfortunately we could not talk for long as we had to get to Windhoek in time for Susanne’s flight back home.

A few months later I had to meet Michaela Fink from the University in Giessen, in Windhoek. On my return home I stopped in Okahandja and went looking for Black Jack. Having found Black Jack, he introduced me to the Chief’s son, Izak. Izak showed me the Chief’s green card. Here in Namibia a green card is not your ticket to the United States. It is a ‘file’ on which all state hospitals and doctors record prescription medicine etc. Every state patient thus has a green card.

It was no surprise to find that since 2005, Chief Petrus has been on Hadol (Haloperidol). This is the most common drug that the doctors throughout Namibia prescribe to any patient that has the slightest brain dysfunction. To me, this means that Chief Petrus has been chained in chemical chains for nine years! Nine years in which his quality of life has been stolen while people get rich from selling these horrible drugs. Let me explain myself.

Chief Petrus was (and possibly still is) an incredible sculptor. He not only created jobs for thousands by starting the Okahandja Arts & Craft Market, he also sculpted three life size rhinoceroses. One is in Germany, the second at a lodge close to Kimberly (South Africa) and another at Molopo Lodge close to Upington (South Africa).

He was on the brink of receiving a government loan to start-up a massive workshop in Okahandja when a mysterious disease took hold of him. Since then Namibia’s state doctors has been keeping him on a strict diet of Hadol without ever referring him to a specialist. And so this has continued for nine years…

The Result?

Chief Petrus’s right hand shakes so badly that he can hardly work. He is still the Chief, but his dreams and many that he has helped, was destroyed in 2005 with the first prescription of Hadol and irresponsible practise of medicine. People that are seen as poor and useless, they have no right to proper medical attention. I can never really know what Chief Petrus has meant to so many people and what he still means, but I am about to fight for every bit of right he has.

chief petrus

2014: The Year in Review (3)

2014: The Year in Review (3)

What we discovered:

It came to light that many Africans and also the world seems to think that brain diseases like Alzheimer’s, Vascular Dementia, Lewy Bodies etc. does not exist here in Namibia (Africa). But why?

The first reason I formulated one day after randomly meeting a German tourist in Etosha. He stopped next to me, rolling down his window and looked at the sticker on my door. He said: “Am I really reading what I think I am reading?” I asked him what it is he thinks he is reading. He asked: “Is there dementia in Africa?” I laughed as I responded: “Well, in Africa, like all over the world, people have brains. And if you have a brain, you can get brain diseases.” He was somewhat embarrassed but then explained himself by saying that from his medical background he knows that Africans and especially here in Namibia, there is a very low life expectancy (57 for men and 59 for women). So how can there be brain diseases? Well, you see, brain diseases like Alzheimer’s are not limited to the aged. This is a fairly common misconception and secondly, the life expectancy is an average brought down by a very high infant mortality rate. So yes, people do get old in Namibia (Africa) and no, it is not only the elderly that suffers from brain diseases.

The second reason is that people from around the world seem to think that the black African cultures have not discovered the Western world’s foods and medicines. (This is only my perception and not based on any facts.) And since the rest of the world is discovering what all the food and medicine do to our systems, they think that Africans cannot possibly have the same problems as they don’t eat and drink like they do. The truth is that our black cultures are using and abusing the same food and medicines that the rest of the world is using, but without the necessary precautions.

To be Continued….

Providing Palliative Care to People with Mental Health Illnesses

Palliative Health

Providing Palliative Care to People with Mental Health IllnessesAs unfortunate as it is, people who suffer from one or more mental illnesses tend to die anywhere from 10 to 15 years sooner than those who don’t have mental illnesses.  Additionally, those with mental health conditions require more in-depth end-of-life care due to their psychological needs. On the upside, there are palliative care facilities and services that are available for these people.

Understanding Mental Health Illness and Its Effect on Palliative Care

When a person suffers from a mental health illness, he or she may or may not be aware of the condition.  Take for example a person who suffers from dementia.  At times, the person may be well aware that dementia is causing problems, while at other times, the condition itself may cause the person to be unaware of its presence.  Its circumstances like this that make providing palliative care to those with mental health illnesses a…

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Kaputu’s History

Kaputu’s History & Her Healing Process

The last time that I visited Opuwo, I met Uapindika, Kaputu’s sister. Uapindika told me stories about Kaputu’s childhood that would make good thrillers.

Kaputu’s father died when she was still very young and her mother then decided to move to Angola to her family. Kaputu’s grandmother decided that Kaputu was not allowed to move to Angola and kept her here on the Namibian side. Why she decided this, I really don’t understand as Uapindika says the grandmother never like Kaputu and she immediately tied her to a tree. Maybe it was because she needed help in the homestead and believed that Kaputu could be rid of the evil spirits that possessed her, who knows? But she took her to a witch doctor to do just that. No evil spirits emerged and on their way back to their kraal (homestead), Kaputu grabbed a rock and hit the grandmother on the head and tried to run away. Needless to say, this was a futile effort and Kaputu ended up being permanently tied to a tree.

A few years later her mother passed away and soon afterwards her grandmother also passed away. Whether this was fortunate or not, I also cannot quite decide as an uncle then decided to take Kaputu in. He basically tied her in the hut during the day and who knows what happened during the night as Kaputu soon became pregnant. During her second pregnancy, she conceived twins but neither survived. Her uncle then decided to contact Canagombe Hembinda to take her away. It is Canagombe who contacted me in November 2013 to come and see Kaputu just after the birth of her fourth child. (Another rape?)

Koos from Epupa Falls Lodge called me about a week ago, very excited. He had just returned from Mbakutuka Komapando (Our Himba Dementia Village) to off load a load of Makalani branches that we needed to use to cover the fence surrounding the village.  The reason for his excitement – while offloading he noticed Kaputu coming from the tent with a bath of water that they use to ‘shower’ in the mornings on her way to water the vegetable garden that we have planted. This is the same Kaputu who could not eat or drink by herself in the state hospital, let alone walk.

And yesterday, 22nd April 2014, Koos calls me again. This time he is even more excited than the previous week. During Koos’s last visit at Mbakutuka Komapando to offload the final batch of Makalani branches, Kaputu sits under the shade of an old Mopani tree and waves for him to come closer. Koos walks to Kaputu and she greets him with a strong voice and even stronger grip, smiling all the while. She then continues to eat her “pap en sous” (porridge with a meaty sauce). The same Kaputu who had to be force-fed in hospital.

UAPINDIKA & CORNELUIS (Translator & Witch Doctor)

Uapindika & Cornelius (Translator & Witch Doctor

It has been three weeks since Koos and I decided not to renew Kaputu’s prescription of psychotic medicine. Koos: “She is becoming human again, Berrie!” And how true are his words?!

We believe…

… Every person has:

ADN

Alzheimer’s Dementia Namibia

  • The right to be free: Unchained might it be physical by chain, rope or cloth or chemical by drugs and sedatives.
  • The right not to be isolated for whatever reason
  • The right to do whatever you can still do and prefer to do
  • The right to live on your own as long as possible and it is safe for you.
  • The right to quality of life
  • The right to be heard and to hear
  • The right to be part of the community/ a family
  • The right to die in a dignified way

The Spectre of Dementia and Memory Loss

Sanjiva Wijesinha

dymentiaDementia, defined as the loss of one’s mental capacity, has been shown by recent surveys to be the disease most feared by people over 65.

This may well be a rational fear as the idea of losing independence, cognition, and personal memories as we age is something that takes away our very sense of self. A person who develops Dementia in effect would cease to exist mentally but still be alive physically – so in some respects the condition is even worse than death itself. As our population in this country ages and we become more aware of loved ones and people we know losing their mental faculty as they get older, it is important that we understand what the early signs of Dementia are and have an idea of what it means to suffer from this terrible and soul-destroying condition.

Dementia is not confined to any specific ethnic or…

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No nation is free before everyone isn’t free? (Part 2)

Written by Berry Holtzhausen – 11 February 2014

I have to be on time for my appointment with the Tanzanian doctor, so I arrive at exactly ten minutes to nine at Ward 16. Already there are between thirty and forty patients waiting for the doctor. The same nurse as yesterday greets me at the reception desk. Ironically, she is also doing exactly the same as yesterday – counting tablets that to me looks exactly like Smarties. She directs me to the same desk as yesterday to wait there for a nurse who can assist me. But today, she speaks to the other nurses in her language and it is clear that they are talking about me. One of the nurses comes to me and asks me to wait a little bit.

Kaputu with the nurseThis last nurse walks to the grated door where at least ten of the ‘inmates’ are already on their post. One of them even has all her earthly belongings with her. She is probably hopeful of being released today. Maybe this is her daily routine? Whatever the case, this redefines hope for me.

After a while, the nurse returns with Kaputu. From my perspective, it is a new Kaputu. She is still very weak but she can walk on own again, even if it only ten meters at a time. The nurse was holding a medical file, something that was not available yesterday because nobody could reach the doctor.

She, the nurse, calls me to follow her and Kaputu into the doctor’s office. We pass all the patients who have been waiting since day break to see the doctor. It hits me that that the doctor has been waiting for me to come first. Once inside, the doctor I explained that she has seen Kaputu yesterday after I had left. She explains to me that Kaputu is very weak and that the nurses will have to feed her every day and see to it that she drinks water. She also says that she will need to run more blood tests on Kaputu, but that she is fairly sure that Kaputu will be ableto go home in about three weeks’ time. She asks me for Kaputu’s medical history and life story. Of course I know so precious little about her that it is difficult to make sense from any of it. But I still tell her everything I know.

Before I leave, I ask the nurse assisting Kaputu to translate something to Kaputu. I kneel down in front of Kaputu and softly call her by her name. I promise Kaputu that I will take her back to Ndjinaa, Venoo, Tjauriza and Nancy – that I will return her to Kapika’s Omaramba. I ask her to eat her food and drink her water so that she can stronger and that we can go home.

Then Kaputu does something very odd. In all the time that I have known her, she has never followed anyone anywhere let alone gets up one her own and goes somewhere. But now, as I get up, she stands and follows me to the door. The doctor and I smile as we realize that Kaputu has in fact understood me.

I leave the hospital feeling much more relieved than yesterday. In my pocket I have the doctor’s details and an agreement that as soon as Kaputu is better, I can come pick her up. Both the nurse and the doctor promised to take good care of Kaputu and ensure that she eats and drinks.

We have a long way to go in Namibia (Africa?) but with the support of doctors like the one I have just met, I am hopeful that we can win this struggle for the freedom of people living with brain diseases and other brain dysfunctions.