Living Well W/ Dementia

Posted on October 16, 2016

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The views in this article are my own. They do not represent the views of my employer in any way.

Note – PLWD: People Living W/ Dementia

“Living well with dementia” is all the buzz now, and rightly so. There is much stigma attached to a diagnosis of dementia. People are forced to hide because those diagnosed feel like their lives are taken over by those around them or that their views aren’t taken seriously.

The false belief that dementia is basically memory loss or that it can happen to only the elderly, all add to the stigma related to the diagnosis, especially for younger people. So let me make a blanket statement before I proceed.

Dementia is a combination of symptoms related to memory loss, understanding and judgement.  The symptoms that a person might experience and others might notice may depend on the part of the brain that is affected. Here is a picture of the lobes of the brain to give you an idea of the different capacity losses that a person might experience.

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In the course of my work, I have met some incredibly high functioning people living with dementia (PLWD). They are able to lead very fulfilling lives that includes living independently with minimal support, commuting to different events on their own, enjoying creative expression, using witticisms and even advocating for the disease. I follow blogs by people living with dementia, and they do not cease to amaze me. If they did not self-disclose, I would have never known. Their ability to articulate clearly their symptoms and experiences is so powerful and essential in today’s current obsession with the tragedy discourse around dementia.

Of course, not all dementias are the same and the experience of different people with the same diagnosis can vary by night and day – even during the same stage of the disease – because it depends on much pathology has impacted their brain! I have seen people who have lost a lot of their capacities like being able to hold a conversation, think deeper and analyse and some even need help to go to the bathroom. But I have seen them enjoy social activities, creative expression, and even travel to incredibly distant countries with their family. They have told me how much they appreciate their families or how upset they are with them. Their range of emotions and expressions remain.

When people start talking about Living Well W/ Dementia, my brain starts hurting. To put it bluntly – I did not live well with (my mom’s) dementia. The guilt that comes with that is very uncomfortable. And then I spoke with a few young carers like myself and realized, I was not alone. We all echoed the same thought, “Is it somehow my fault that my parent is not having the same experience as these amazing examples?”

That made me think – what is required to really Live Well W/ Dementia? I will try to answer this as briefly as possible.

Factors that can be influenced: 

1. Hear their voice: All services need to be determined and vetted by PLWD and caregivers. This goes beyond inclusion. This starts with knowing the needs of people and then building specific services to address those. Creating opportunities for PLWD and caregivers to raise awareness is more effective. Some of my clients tell me they find it empowering and gives them a sense of purpose in an otherwise scary battle.

2. Access to resources: This goes beyond money. From diagnosis to hospice, access to stage-appropriate services is crucial. On a daily basis, access to transportation, meaningful activation, financially-viable programming, financial planning, volunteer support to help with appointments, meals, respite, etc. are examples of what might be essential. This is not an exhaustive list.

I have a 48-year old client living with Young Onset Dementia; she uses every free program there is out there. She is busy every day of the week. She is constantly looking for what she might do. She has trained all of us to look for things for her. Whenever I see a free art workshop, my brain automatically thinks of informing her!

3. Education and support: These are essential for both, the PLWD and the caregiver. Not everyone has a caregiver. But when there is a caregiver, being on the same page in terms of accepting the diagnosis, understanding the progression and preparing for the future, is extremely crucial. The PLWD and the caregiver need a safe space to express themselves without judgement throughout their journey with dementia. Caregivers need support and education that enables them to treat PLWD with respect. All too often, caregivers taken on this didactic role with the PLWD. This can be a serious blow to the self-esteem and selfhood of PLWD.

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Music and creative therapies allow families to have fun and forget about dementia for a while.

Support around role changes in the relationship is extremely crucial. This is especially complex when one of the primary caregivers is a young carer (like I was). Their needs are unique, and there aren’t enough programs out there to bridge this gap. Watch THIS short video to get a glimpse into the life of a Young Carer.

Services have to be flexible. It has to be relevant to the PLWD and their family – they may not be willing to go to a support group, but they may be interested in a picnic or something fun. A follow-up three to six months later might be helpful in reconnecting them to the services. What about rural communities? How can services be made more accessible to them?

4. Dementia-friendly communities: Public awareness about dementia is so abysmal that a PLWD and their family experience a different level of isolation. I have innumerable examples of how friends and family stopped visiting because they couldn’t “handle” the changes in the PLWD. We need an educated and empathetic community. If someone isn’t receiving it from their own circle, being able to access it through a community agency becomes crucial.

A caregiver, Joan*, told me this story yesterday – her mother, Tara* and she went to their bank. Joan stood at a distance, wanting to give her mom privacy as she withdrew money. Tara told the cashier that she wanted to withdraw $2000. The cashier asked her jokingly if she was going away on a trip. Tara said, “Oh, no! I am just going to the mall and spend it.” The cashier asked her if she was joking. Eventually, she called for my client. Tara has had dementia for 10 years and issues with money have never come up before. The bank staff managed to convince Tara that she can withdraw only $300 at a time. Joan said that she was very impressed at how well the cashier and the customer experience staff handled the situation!

Unfortunately, such experiences are very rare. It is more common for PLWD to get banned from supermarkets and fast food chains.

Education for a schools, banks, super markets, taxi drivers, airport security, doctors of different specialties, restaurants, etc. is extremely essential in making a community dementia-friendly.

Factors that cannot be influenced:

A. Insight: Whether a person has the capacity to realize that there is something going on with them depends on the type of dementia they have. From what I understand, pathology in the frontal lobe can impact insight. This can impact how willing they might be to get diagnosed and plan for the future, or even be open to redirection.

Behavioural symptoms associated with the loss of inhibition that one often sees in people with frontal lobe changes can be extremely hard to understand. E.g. I have a client who often goes to McDonald’s and complains loudly that the staff don’t wash their hands after using the bathroom. This is excruciating for his wife. Several others with frontal lobe changes make sexual comments towards others – this often gets them into rows.

Unfortunately, the type of brain changes one may be experience seems to be a lottery! Combined with a dementia-negative world, these symptoms can be stigma-reinforcing.

The only way we can start coping with these is to be open about the changes we see in our family member. Encourage friends and family to seek education. Once we see the positive impact of education and the relief it brings, we might be more inclined to sharing these issues with people in the outside world too. Dementia doesn’t afford us privacy, sadly.

So here is the summary of what I am trying to say:

It takes a community to help a person/family live well with dementia. So, what will be your contribution?

To become a dementia-friend or a dementia-positive person, you can contact your local Alzheimer Society chapter and get started.

I wrote this post mainly to tackle the guilt I was feeling about how badly I coped with my mother’s illness. I feel much better knowing that my experiences were not entirely my fault. This list is not exhaustive – there’s several things I could have missed. You’re welcome to tell me what they are and I can add them to this post. 

 

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Posted in: Dementia