Lessons from the Reading Room with Hazel McGuiness

Communication Series – PART II: Dementia/Alzheimers: Understanding and Communicating

There are over 564,000 Canadians living with Dementia/ Alzheimers today and more than 1.1 million are affected either directly or indirectly by this disease. By the year 2031 this number is expected to increase by over 66% to approximately 937,000 people. Yet less than 5% of our health research budget is allocated to fund research and development for this type of illness.

Despite these staggering figures, we are still struggling to understand this disease and how we can best care for those afflicted by it.

While physical care can be challenging, often the biggest struggle is determining the best way to effectively communicate with someone who, at some stage may or may not be able to understand or remember.

I recently had the opportunity to sit down with Hazel McGuiness, local Author, Keynote Speaker, Medium and Spiritual Advisor. Hazel has first-hand experience with being the primary caregiver for a loved one living with dementia, and she was kind enough to share some thoughts and facts with me about how we need to develop a better understanding of effective communication methods for those living with this disease.

Dementia affects the cognitive function of the brain, making memory, language, verbal and visual memory, long-term and short-term recollection, and abstract thinking a challenge. As a result, we need to be creative in using innovative methods to help our patients and loved ones to understand, interpret and follow verbal and visual cues. The health care profession often focuses and prioritizes physical needs over emotional needs. The consequences of this are clearly manifested in dementia patients who will exhibit frustration, anxiety, aggression and agitation due to unmet needs and a lack of understanding. Loved ones and caregivers, and the medical profession as a whole need to reevaluate these priorities and revisit how we can better communicate with those affected.

KNOW THEIR STORY

Knowing their background, their personal stories and experiences. If we have a better understanding of their journey up until this point, perhaps we can better communicate with them as their illness progresses. Do they enjoy reading? Music? Sitting and reading a favourite book out loud, or playing music that is meaningful to them can often help to bring back memories of people, places and events. Photographs and videos can be helpful in pointing out people they may have forgotten. Being surrounded by familiar things can often help to alleviate stress and anxiety and instill feelings of comfort and acceptance. Change can be frightening for many of us but even more so when you are struggling to remember even the little things.

EXPLAIN, REPEAT, REPHRASE

When caring for someone with dementia, instructions and expectations should be clear, concise and easy to understand. Offer detailed explanations as to what is happening. For example, simple phrases may be more effective, like “Let’s go for a walk now” or “it is time to eat dinner”, as opposed to a lengthy explanation such as “it is a lovely day out and the flowers are blooming, so I thought we would go down to the park and go for a walk”. Keeping it short and to the point may make it easier for them to understand what is expected and what will come next.

Grandmother and granddaughter watching old photo album at home. Senior woman shows child black and white photos. Retired person and kid are happy. Family leisure.

PATIENCE AND UNDERSTANDING IS KEY

While it may be frustrating for you to not be remembered one day after your last visit, we must be cognizant of the fact that it is even more frustrating for the patient who is unable to recall seeing or speaking to you. Being specific and reiterating and repeating is often ineffective as (particularly in the later stages) they may not be able to recall a conversation from 5 minutes ago. Life for dementia patients is often lived in the “now” as opposed to the past or the future, Perhaps a response such as “well I am here now”, or “I am enjoying spending time with you” is a better approach to take to let them know that we are here to help.

GRIEVING A LOSS

Dementia is a fatal, progressive and degenerative disease. Both the person who is affected and their loved ones will experience grief, loss, and all the stages that go along with it. For the person experiencing dementia, they will grieve the loss of the life they once had, the loss of their treasured memories, and loss of the ability to independently care for themselves. Loved ones are distressed to lose the person they once knew, and they may find it upsetting when they are not recognized by someone who has been an important part of their life. Anxiety and depression are commonly experienced side effects and counselling and support groups can be helpful.

It is a well-known fact that people who are affected by dementia often see or speak to those who have already passed on. It is understandable that some caregivers may find this to be disturbing or frightening, and this is often dismissed as being “part of the disease”. We should, however, consider the possibility that perhaps it is comforting for dementia patients to remember and converse with those whom they loved dearly, or family and friends they enjoyed spending time with in the past. Is it possible that their departed loved ones are the ones who are best suited to communicate with them? Maybe they are the ones who are most equipped to let them know that they are understood, and everything will be ok. Perhaps we can take comfort in the realization that our loved ones who are saddled with the heavy weight of dementia are free of this terrible disease once they cross over.

Hazel McGuiness is located in Orangeville, and has been welcoming clients into her Reading Room for more than 25 years. To contact Hazel or book a reading, please visit her website at www.thehazeltree.ca

Written By: Tanya Bottomley

Author: LivingSpaces

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