Someone I Love Has Dementia. Where Do We Go From Here?
When someone you love is diagnosed with Alzheimer’s or another dementia, the news can be devastating and the outlook bleak. But the truth is, there are thousands of people all over the world living rich and full lives for many years after diagnosis. What is their secret?
My first experience with dementia was typically tragic. Over the course of a decade, my grandmother transformed before my eyes from the most beautiful, classy woman I had ever known into someone who cried all the time and ate with her fingers at the dining table.
Receiving a diagnosis of dementia is a time of high emotions: shock, anger, fear and sometimes even relief. When these emotions aren’t processed and worked through, they can settle in the body and impact us physically. This can result in insomnia, headaches, loss of appetite, over-eating or a host of other symptoms.
Psychologically, our world is thrown upside down as we scramble to plan for an uncertain future. Spiritually, we may question our faith or our God and our purpose in life may seem less clear. We become socially isolated as we withdraw from our friends and communities, pulling into our shell to hide this shame from the world. Add on top of that the tremendous financial impact of a dementia diagnosis and you have a perfect storm for overwhelming hopelessness and helplessness.
A diagnosis like no other: Prescribed Disengagement ®
When people are diagnosed with dementia, the prescription they are given is to go home, get their affairs in order and live out the rest of their days as well as they can. That’s basically it.
Prescriptions are supposed to help people get better…but not when it comes to dementia. Even when people are diagnosed with stage 4 cancer or heart failure, doctors offer treatment options that — at a minimum — are designed to give people choice and offer a chance at a good quality of life.
When neurologists, geriatricians, and family physicians prescribe disengagement from pre-diagnosis life, their intentions are good. They want to help but they really don’t have much in the way to offer besides prayer and a pat on the back. When this is the only perspective people take, combined with the pervasive and disabling stigma around dementia…it is no wonder that diagnosis is so devastating.
Unfortunately, this is how most people experience diagnosis. But what if it was different? What if doctors could offer people not just a death sentence, but a chance to fight for their lives?
There is hope
Over the past decade, my perspective on dementia has changed radically. I came to believe — academically, at least — that there is a lot that can be done to improve the quality of life for people with the condition. There are different ways of going about treatment, in addition to pharmaceuticals, and most importantly there is hope for living positively with dementia.
It wasn’t until Dementia Alliance International that I saw that hope in action. DAI is an international non-profit organization whose membership is exclusive to those living with a medically-confirmed diagnosis of dementia. They provide free, online peer-to-peer support groups for thousands of members in 49 countries. DAI is also very active in the international policy and advocacy arena, working to secure the human and disability rights for all people with dementia.
The members of Dementia Alliance International are living proof that people can live positively with dementia. All over the world, people with dementia are leading lives with meaning, purpose, joy, connections, and community. Yes, they are living with difficult diagnoses…but they choose to not be defined by their disease.
And thanks to DAI, they are part of a global community that is free of stigma and discrimination where they are valued and included.
Dementia as DisAbility
One of the most important things I have learned in my work with DAI is the value of seeing the symptoms of dementia as acquired cognitive disabilities.
When someone has a physical disability and needs to use a wheelchair to get around, we adapt environments to help them be successful and to live their life as they want to. In the same way, we can think in terms of “cognitive ramps” when it comes to cognitive disabilities. It is all about enabling people to be successful. By taking a disability perspective, we help to change attitudes toward dementia which results in increased autonomy and improved quality of life.
In practical terms, there is a lot that we can do to support our loved one’s independence and dignity when operating from this perspective of dementia symptoms as acquired cognitive disabilities.
Here is a small sample of cognitive ramps that are used by people with dementia in their own lives:
labelled cupboards, cabinets, and drawers
laminated reminder cards (i.e. steps to getting dressed)
large calendar (month, day, year)
notice board for messagesnotes stuck by the front door
helpcards and identity bracelets
medication organizers and pill packs
People with dementia have good days and bad days, just like the rest of us. On days that routine tasks — such as getting dressed or putting away laundry— are more challenging, cognitive ramps can help them be successful in doing things that most of us take for granted.
Communication & Language
Communication and language is another area where we can make a big difference in the lived experience of people with dementia.
Very often, we talk around people with dementia rather than directly to them. And when we do talk to them, maybe we speak very loudly or very slowly…even if they don’t have hearing problems. Again and again, we unwittingly infantilize people with dementia in everyday interactions.
Practically speaking, here are some communication tips developed by people with dementia:
remember they have something to say too
pay attention to nonverbal cues and body language
give reminders and prompts
allow time to think, find the right words, answer questions, or write down thoughts
provide one suggestion at a time and provide fewer options/choices
encourage communication by any means possible (pointing, blinking, writing, typing)
As dementia progresses and new symptoms appear, a person’s communication needs may change. This is where creativity comes in. If words are difficult to process, people may rely more on nonverbal communication channels like body language, gestures, and demonstration.
Always remember that the desire to communicate remains, even when the ability to speak is gone. People with dementia should be encouraged to be open about their experiences. They have the right to be able to express their wants and needs in an environment that is supportive and respectful of the fact that they are a human being with a rich history, preferences, and personal interests.
The language that is used when people talk about dementia — like ‘suffering from’ and ‘fading away’ — is dark, bleak and dehumanizing. And so we see dementia as dark, bleak and dehumanizing. This is because the language we use does far more than describe reality; it prescribes it.
Here are some practical language guidelines developed by people living with dementia:
Dementia/a form of dementia/symptoms of dementia — NOT dementing illness, demented, affliction, senile dementia, senility
Condition — NOT disease or illness
Younger onset dementia — NOT early onset dementia when referring to someone under age 65
Person living with dementia/person diagnosed with dementia — NOT sufferer, victim, demented person, patient, subject, case, demented sufferer, vacant dement, fading away, not all there, disappearing
Family member or person supporting someone with dementia — NOT caregiver, carer
Disabling/challenging/life-changing/stressful — NOT hopeless, unbearable, impossible, tragic, devastating, painful, distressing
Impact/effect of supporting someone with dementia — NOT caregiver burden
Changed behavior/challenging or difficult communication — NOT aggressive, wanderer, poor feeder, wetter or incontinent, obstructive, non-communicator, etc.
By changing the language around dementia, we help chip away at the stigma and Prescribed Disengagement® people experience from the moment of diagnosis onwards. This negative language is pervasive in the media, popular culture, and the medical community and so it is up to each of us as individuals to change the language around dementia in our own spheres of influence.
It takes a village
When someone we love is diagnosed with dementia, we start to wear a lot of new hats. This new reality requires us to undertake new roles and adjust to changing responsibilities as we learn to stand on ground that is ever-shifting, uncertain, and unpredictable.
Just like cancer, heart disease, diabetes or a host of other chronic, progressive conditions, people with dementia can live positively for many years after diagnosis…if given the choice to do so.
There are going to be other people involved in your loved one’s care — family, friends, medical professionals, and community members — that directly impact their lived experience. As you progress through this next stage of your journey, work to build a village — a community of people — that values and includes your loved one as a human being who is deserving of dignity and respect.
The choices that we make every day — the language we use, ways we communicate, actions and attitudes that enable or disable people we care about — help define the lived experience of people with dementia.
When we live by example and share with others our hope and our perspective, we give them a choice to experience hope in their own life. This is how great change happens.
Never forget that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has. — Margaret Mead