disease

#ilivewithdementia

In last week's post entitled, Showing Vulnerability to Build AwarenessI talked about a new Alzheimer Society of Canada awareness campaign I am featured in. 

I wanted to revisit the topic and discuss how powerful I think this campaign is. I read all of the stories included on the website and found them both inspiring and disheartening, simultaneously.

I did discover some very interesting patterns interwoven throughout the stories, including:

  • the level of care and understanding differed based on geographical location;
  • stigma still exists and it is primarily based on a lack of education;
  • the diagnosis and the disease itself greatly impact caregivers and families, which is still not being addressed in the way it could and should be; and 
  • the person suffering from dementia is still a person and deserves to be treated with dignity and respect.

These people were brave enough to talk about how they live with dementia on a daily basis. I  strongly encourage anyone living with this disease to discuss their situation as it is in itself unique. 

The only way to start addressing stigma is by getting the word out there and discussing dementia in a meaningful way. I want to know how you live with dementia.

Let's build a network of people living with dementia and their caregivers to educate the public. Ours is a compelling and cautionary tale; one that’s only just beginning for an entire generation.
 

APOE gene gateway to halting the disease's progression

An increasing number of studies demonstrate that the APOE gene, responsible for encoding a protein called apolipoprotein E, dramatically raises the risk of Alzheimer's, partly by encouraging amyloid beta to collect into damaging plaques, a key component of the disease.

There are three types of the APOE gene, called alleles: APOE2, E3 and E4. Everyone has two copies of the gene and the combination determines your APOE "genotype". There are six APOE genotypes: E2/E2, E2/E3, E2/E4, E3/E3, E3/E4, and E4/E4. 

The E4 variant of the gene is "the most prevalent genetic risk factor" for Alzheimer's, with over half of people with the condition having this gene expressed. Studies also show that people who have both copies of the gene have a 12-fold higher risk of developing Alzheimer's disease.

A study led by Dr. David Holtzman, head of the Department of Neurology at the Washington University School of Medicine in St. Louis, MO, Research was conducted to understand the role of APOE in the formation of Alzheimer's disease. 

A Ph.D. student named Tien-Phat Huynh, Dr. Holtzman and colleagues, targeted the APOE protein using a kind of DNA-based molecule created by co-author Tracy Cole, PhD, and others at Ionis Pharmaceuticals. The molecule – known as an antisense oligonucleotide – interferes with the instructions for building the APOE protein. The findings are now published in the journal Neuron.

The researchers injected the compound into the fluid surrounding the brains of newborn mice. For comparison, they gave other newborn mice either saltwater or a placebo “oligo” that does not interfere with the APOE instructions.

Levels of APOE protein dropped by about half in mice given the APOE compound as compared with those that received the placebo oligo or saltwater. 

Dr. Holtzman said about his findings, "If you wanted to target APOE to affect the amyloid process, the best thing would be to start before the plaques form."

Gene and drug therapy are in the works, but more work is needed before the compound could be evaluated in people.

To learn more about these programs and other APOE-related drug discovery programs, investigate the  Alzheimer's Drug Discovery Foundation research portfolio with a filter for "APOE4."

 

Live in their reality

Last weekend I went to a Death Cafe gathering in my town and someone said this really profound thing that I haven't been able to stop thinking about. 

First off, in case you were wondering what the Death Cafe is, their stated objective is 'to increase awareness of death with a view to helping people make the most of their (finite) lives'.

During the meeting, I brought up my mother's condition and how it is really difficult to watch her slip away and be unable to turn to her as a mother. In response, the Facilitator of the Death Cafe introduced the following concept:

Live in their reality
— Stephen Garrett

 

 

When it comes to caring for someone with dementia, it is important to understand that they are no longer living in your world. They are experiencing social cognitive, functional and mood changes that they don't even understand. 

As the disease progresses, it is crucial to react with care and compassion. If they cannot meet you in your reality, then you can meet them in theirs.

People often get really irritated and flustered when their loved one doesn't act in the way they feel they should. The more you try and correct them, the more agitated they become.

Don't take it personally. It is not them, it is the disease. 

For more information about the benefits of staying in their reality, visit The Upside of Aging blog.

 

Cutting edge research

I was so excited when I heard that the Medical Arts Health Research Group facility in Penticton, BC is conducting a study to evaluate the efficacy of a new medication (Aducanumab) on early Alzheimer's disease. 

This study is project is part of a global study called Biogen Engage Study and is looking to determine whether Aducanumab, can slow progression of early Alzheimer’s disease, as well as investigate whether it’s safe to use in patients.

The hallmark of Alzheimer’s disease is the development of plaques (sticky deposits, sometimes called clumps) and tangles of certain types of proteins in the brains. These plaques are made up of a protein called beta-amyloid, which is thought to be a major cause of brain cell death which contributes to the progression of Alzheimer’s disease.

Many researchers think that developing drugs to target beta-amyloid could help to slow or halt the progress of the disease, when taken early.

The ENGAGE and EMERGE studies is trying to determine how safe and effective an investigational anti-plaque medication is in slowing the progression of early Alzheimer’s disease.

They are looking for 2,700 participants from around the world to take part.

If you are worried about memory loss, review the top 10 warning signs of Alzheimer disease.

Out in the Open

Today I was interviewed by a producer for CBC's Out in the Open with Piya Chattopadhyay about my mother's disease and my experiences caring for her.

This was a dream come true as I always wanted to be affiliated with the CBC, I just did not expect it to be in this capacity.

It was a bittersweet moment. It was wonderful to share my story as it has the possibility of touching people, but it is hard to reveal the intimate experiences of this disease and the choices I have had to make because of it. 

The interview made me feel vulnerable. It was like exposing a part of myself that does not otherwise get to see the light of day.

I realized that we, as caregivers, do not talk enough about what we are made to endure because of this disease. I am not sure if it is because of stigma or because the sheer act of discussing it brings emotions to the surface that are otherwise boiling just underneath.

I hope that through this small act of bravery, I will encourage others to speak up and join the discussion.

Our voices and experiences have the power to make a difference.

There is no time like the present to take action.

 

 

One Third of Dementia May Be Preventable

One Third of Dementia May Be Preventable

At the Alzheimer's Association International Conference 2017, the Lancet International Commission on Dementia Prevention, Intervention and Care reported that global dementia cases may be preventable through lifestyle factors that impact an individual's risk. These potential risk factors have been identified at multiple phases across a life-span, not just in old age.