Gaining knowledge about dementia, and the person living with it, will help you no matter what career path you have chosen. You will be interacting with someone living with a dementia, even in the Neonatal Intensive Care Unit, because Grandma or Grandpa has it. Not only that, but statistically someone in your circle of family and friends will develop it, maybe more than one.
Dementia is more than just a memory problem. It is an umbrella term that covers a number of neurodegenerative disorders of the brain that effects memory, executive functioning, judgement, the ability to reason, as well as visual perception, and more. If you look at a dictionary definition it will include synonyms like madness, derangement, insanity, lunacy, and mental illness. Dementia is none of those things. It is a neurological degenerative condition and it is fatal. These synonyms are offensive to persons who live with dementia, their care partners, and those who advocate for excellence in dementia care. They are not only false and misleading, but contribute to the stigma and mythology that surrounds the condition.
A person gets diagnosed with dementia and suddenly the world begins to dismiss them. People start to talk over them, instead of with them, their opinion and consent are no longer sought. One by one their basic human rights are eroded. Their friends, and sometimes family members, disappear from their lives. Everyone suddenly acts as though this person is no longer capable of making decisions about anything. Fortunately this is beginning to change as more and more persons living with the condition, and their care partners, speak out and show the world that one can live well with dementia when you have the right supports in place.
As the daughter of someone who lived with Vascular Dementia, and a registered nurse with many years of experience in General Medicine, Oncology, and Long Term Care, I have seen some very troubling care practices, where people are stripped of choice and dignity, warehoused in care homes mired in the old biomedical model of care, where tasks trump people, and the answer to many expressions of feeling (a.k.a. behaviours) is physical, environmental, and chemical restraints (i.e. antipsychotics). I have also seen some amazing person-centred dementia care where those who reside in the home live lives full of joy and purpose (i.e. those lucky enough to live in homes that embrace the new culture of care such as Dementia Care Matters Butterfly Household® Model of Care, founded by Dr. David Sheard; the Eden Alternative®; Lantern Assisted Living, and also Silverado Memory Care, just to name a few). It all depends on how person-centred and emotionally intelligent the organizations and the people they hire are.
I am frustrated by the old culture of care, a system that is task oriented, risk-adverse, and controlling. We restrain people into chairs to prevent them from falling (often resulting in the person becoming agitated and pulling the chair over on themselves trying to get out). We disinfect everything, aren’t allowed to have communal food, can’t put interesting things on the walls and ceilings to look at due to fire regulations, and on, and on, and on. We suck the fun out of their lives in the name of safety. Persons with dementia need the people who care for them to enable them to have purpose and meaning in their life, and to provide many small moments of joy throughout the day. We need to meet the person where they are living, in their reality, and accept them for who they are today, not pining for the person they were in the past.
It is important to note that although many memories progressively fail during the progression of the disease, emotional memory remains intact. Many are under the mistaken impression that because dementia effects short term memory it doesn’t matter what you say in front of the person, or what you do to them (or don’t do). The person in a more advanced phase of dementia probably won’t remember that you were there, what you said, what you did, or even who you are. What they will remember is how you made them feel. Long after you have left those feelings of love/security/joy or fear/pain/sorrow that your interaction evoked will remain. Along with that memory their expressions of feeling will persist. My mom’s emotional memory helped me through her forgetting who I was. Long after she forgot I was her daughter her face lit up when she saw me, and she would hold my hand and stroke it and smile at me. She remembered the love between us. You never forget the love. And that was enough. As she forgot more and more we forged a new, still loving, relationship that focused on the moment, not the past.
Each expression of feeling is a form of communication. It is telling you about an unmet need, or an emotion they are experiencing. It all has meaning. How you respond makes all the difference. Persons with dementia are intuitive, they pick up on our body language and tone of voice. If we are argumentative, impatient and frustrated they may respond with frustration, agitation, and aggression. If we are kind, calm, and loving, we will be rewarded with love, laughter, and contentment, with the added bonus of gaining the person’s trust.
If you remember nothing else, remember this, as the person progresses in their disease they become less and less “thinking” beings, and more and more “feeling” beings (Sheard, D). Emotional intelligence will be your biggest asset as you interact with and/or care for someone living with a dementia. If you tap into your own emotional memories you will be better able to understand those of the person living with dementia. That song that makes you remember your first kiss, that perfume/aftershave that reminds you of a lost love, the smell of cinnamon buns baking that remind you of your mother. Think of the most important people in your life, what gives you joy, what makes you feel happy/safe/loved, what gives you purpose and a sense of belonging? What causes you pain, terrifies you, or makes you angry? What feeds your spirit? These are the emotions that are behind all those expressions of feelings we see. Understand what brings these emotions out in you and you will be better able to understand those emotions in others. You also need a really in-depth understanding of that person’s history, including their emotional history. If the person lived through air raids during the war the fire alarm during a fire drill could cause no end of distress for them as they are transported back to that terrifying time.
Tom Kitwood, in his book “DEMENTIA RECONSIDERED” the person comes first” (1997, Open University Press; pages 80 – 85), discusses the main psychological needs of a person living with dementia. They are love, attachment, comfort, identity, occupation, and inclusion. Everyone needs to feel loved, and to love others; we all need to feel connected to someone or something; and to feel physically comfortable and emotionally comforted. We need our own personal identity (our preferences, likes, dislikes, sense of style, etc.). We need to have purpose, to be occupied, and we need a sense of belonging, being part of something. This doesn’t end with a diagnosis of dementia, and meeting those six psychological needs is vital to the well-being of the person we are caring for. Too often these needs remain unmet in the current culture of care where the focus is on physical needs and the person must conform to organizational routines and regulations.
George Rook, a person who is living with dementia, responded in his blog to a statement from an article that said a person in a more advanced stage of dementia was ‘dead to all that makes life worth living’ – “What people with healthy brains cannot understand, is how to get into the more and more hidden world of the person with dementia. And you cannot necessarily see when the person is happy or not. You have to spend time with them, understand tiny changes in behaviour.” (link)
It is not up to us to judge whether another human being’s life is worth living. The person in the late stages of a dementia is not a shell of a human being, they ARE a human being. This person should be accorded the respect, dignity, and opportunities for joy that we all expect and deserve.
NOTE: Dementia Care Matters ceased operations in December 2019
Post updated June 15, 2021