Who will be your voice in old age?
Alzheimer's and Dementia: Are you Prepared?
As I sat across the table and watched her eyes wander around the room, I thought to myself: “What is she thinking?”
As she turned towards me, her eyes stared right through me as though I was not there.
She smiled and occasionally chuckled when I asked her if she wanted more to eat. Today was what I would consider a “good day”.
Let me explain ...
It all started years ago when mom would occasionally repeat herself.
At first we thought it was just old age, but later it evolved into forgetting appointments, the date, getting disoriented while driving, leaving the stove on, and forgetting to take her medications.
Friends reported noticing a change in her during phone conversations or while visiting.
In the beginning when asked a question mom would say: “I've been sleep since then” or “I'm busy, I can't worry about that now”.
It was not until I noticed a withdrawal from social and daily activities that I decided to explore the matter a little further.
I convinced her to go to the doctor for an assessment. The results confirmed my suspicions.
Mom was not just experiencing typical age related memory loss. She had dementia. I found myself wandering where do we go from here?
My first response was to do research on the topic. It was then I learned that there is a difference between Alzheimer's and dementia.
Alzheimer's is a type of dementia that causes problems with memory, thinking and behaviour; whereas, Dementia is a general term for a decline in mental ability severe enough to interfere with daily life.
Alzheimer disease is the most common form of dementia.
Although medications are available to slow down the progression, there is no cure for the disease, which is progressive.
The UK Alzheimer's Society Dementia 2013 infographic report states that two-thirds of the people with dementia are women and one-third of the people over 65 will develop dementia.
In the US, Alzheimer's Disease is the sixth-leading cause of death and the fifth-leading cause of death for individuals age 65 and older.
As we grow older we sometimes forget where we placed our keys, wallet, or can't recall someone's name.
Such behaviours do not necessarily mean that you have dementia.
In some situations memory loss is due to normal ageing, stress or other emotional factors. Not all dementias are Alzheimer's.
Other dementias exist such as Dementia with Lewy bodies, Vascular dementia, Frontotemporal dementia (FTD), Parkinson's disease with dementia, and dementias due to various neurologic and medical conditions.
Some dementia-like symptoms can be due to medical conditions such as nutritional deficiencies, metabolic disturbances, hydrocephalus, and/or a brain tumour, to name a few.
Dementia can be classified as either reversible or irreversible, depending upon the cause of the disease.
If you have questions about yourself or a family member discuss the matter with your general practitioner (GP).
Symptoms of dementia may include the following:
— Memory loss — in particular short-term memory, for example, forgetting recent conversations or events; and repeating themselves. Long-term memory is often preserved.
— Personality and mood changes — depression, withdrawal from normal activities, suspicious or confused behaviours.
— Communication problems — word finding difficulty e.g. describing the function of an item instead of naming it.
— Problem-solving difficulty — poor judgment and safety awareness, sequencing and organising difficulty. Unable to manage finances and medication administration.
— Increased language difficulty — reading and speech problems
— Visual spatial problems — difficulty recognising objects and distances.
Watching your loved one change can be stressful and disheartening.
You no longer see the person who once sat around the kitchen table discussing social issues or the person who helped you with your problems.
Instead, the “circle of life” effect has occurred. Our roles become reversed.
You are now the parent and they have become the child. And like children do, they can become defensive and sometimes accuse you of treating them inappropriately.
In most cases the individual has been independent most of his/her life; therefore, it's really hard for him/her to accept help from anyone.
It is important that you remember it is the disease not the person. Therefore, don't overreact.
As the disease progresses, the individual will require more assistance with everyday activities and may eventually require a caregiver. Often, a family member becomes the caregiver.
Although this can be cost effective, it can also be emotionally taxing resulting in caregiver stress or fatigue.
Such stress can present itself as anger, anxiety, isolation, depression, insomnia, difficulty concentrating, health problems or irritability.
Finding time for yourself is vital to reduce the risk of burnout. Arrange for an hour or two to read a book, go to the spa or take some “me time”.
These planned breaks will help you stay focused and relaxed. It is important to know you are not alone.
“Action on Alzheimer's & Dementia” is a local support group which provides education and support to both those with dementia and their caregivers.
In addition, the Bermuda Hospitals Board's (BHB) “Mood and Memory Clinic” provides assessments to both older and younger adults who present with cognitive problems.
Unfortunately, we often wait until it's too late before we plan for old age.
We wait until we are old or sick before we decide to create a will, grant power of attorney, appoint a medical proxy or even assign a next of kin.
As a result, if you are unable to express yourself verbally, family members are often clueless about your wishes.
This can cause contention when decisions are needed in regards to end-of-life issues such as alternative feeding options, placement, finances, etc.
Such topics are “taboo” to many but vital to ensure your wishes are followed.
It is important that you make your wishes known to your lawyer, doctor and family members while you're competent and able to do so.
Be sure that the documents are accessible in the event that they are needed.
Once the individual has been seen by their GP, a referral can be sent to a Speech Language Pathologist (SLP). The individual may be seen for cognitive-communication problems or swallowing disorders associated with dementia.
The SLP will perform an assessment, provide therapy, educate the patient, family and caregivers, and collaborate with other professionals to provide a safe and functional environment for the individual.
Speech therapy sessions may include learning safe swallowing strategies, memory strategies, communication strategies, and organisational techniques.
As part of our National Speech and Hearing week agenda, the Bermuda Speech Language and Audiology Association (BerSLA) wishes to encourage you to take time out of your busy schedule to plan ahead.
The time is now to talk about, “Who will be our voice in old age?”
You never know when your health will change. Therefore, act now ... be prepared. Let your voice be heard.
Action on Alzheimer's & Dementia
Elizabeth Stewart, 538-5494
Mood and Memory Clinic
King Edward VII Memorial Hospital
Dr David Harries, Chief of Geriatric, Rehabilitation Day Hospital 239-1779
The scenario above is an example of how Alzheimer's or dementia can affect both the patient and caregiver. It does not represent any individual case.
BerSLA “More Than Just Talk.
Written by: Wendy Ingham MS CCC-SLP-R
BerSLA President, BHB Speech Language Pathologist.