January is Alzheimer Awareness Month. In light of this, the Alzheimer Society of Alberta and the Northwest territories (ASANT) wants Albertans to be aware that help and information are available through their First Link program.
People are often aware of the term Alzheimer disease, says ASANT spokesperson Christene Gordon. But one of the most frequently-asked questions they get is “what is the difference between Alzheimer disease and dementia?”
“We talk about dementia being the umbrella term for a number of different conditions, Alzheimer disease being the most common of any of the dementias for people over the age of 65,” Gordon said.
While not all dementias are Alzheimer disease, Gordon says ASANT offers support for people dealing with all forms of dementia. Whether you are looking for information or need practical help, First Link is a good place to start.
“If someone is given a diagnosis of dementia, they don’t know that they can turn to the Alzheimer Society for information, for guidance, or system navigation through our health care system,” she said. “This is why our national campaign this year is talking about First Link. If you have a diagnosis of dementia or Alzheimer disease, contact the Alzheimer Society or ask your health care professional to do a direct referral.”
Gordon said dementia is a terminal illness. But there are medications, techniques, and strategies that can help people live well, even with a dementia or Alzheimer disease diagnosis.
“We talk about a palliative approach to care—helping people have as good a life as they possibly can until the end of life for them,” Gordon said.
“And so it’s helping people come to terms with that as well. On average, that eight to perhaps 15 years of living well with a diagnosis of dementia, people don’t know what to expect. And I think of us as having a road map.”
While the Alzheimer Society of Canada supports research into causes, treatments, and hopefully one day a cure for dementia illnesses, they also concern themselves with helping people who already have a dementia diagnosis. It is a result of ongoing quality-of-life research into the psychosocial aspect of living with dementia.
“When I first started doing this work over 30 years ago, there wasn’t a lot of information and there wasn’t a lot of support for either the person living with dementia or for families. It was kind of, ‘well, this is what it is, you know, too bad,’” Gordon said.
But thanks to research, we know much more about how to help people as the damage from dementia advances. Gordon compares it to how we approach certain physical disabilities.
“When we think about people with a physical disability, we think about building them ramps as an example. And so the psychosocial aspect of the research in this area is also how do we build mental or cognitive ramps for people who are living with cognitive impairment—not just for something like Alzheimer disease or one of the other dementias, but brain injury, etc.,” she said.
“So our views on mental health or mental wellness have changed over the last number of years. And I would put Alzheimer disease and the other dementias into that category, about our better understanding of not just the physical aspects or the biomedical research aspect, but also the social aspects of it.”
First Link and ASANT provide “navigators” to help people—so called because while they have a wealth of information at hand, they also have access to appropriate experts, and can help people steer their way through the many different systems and agencies that provide help.
“We try and get people to the right information that they need at the right time,” Gordon said. “And it’s not always us. We’re not always the experts. Our specialty is more around that psychosocial area.
“Getting people to the right place in the medical system is an example. You know, we don’t do diagnosis, we don’t do assessments, but we can help give people that guidance.”
For those who are not living with dementia, but who would like more information, the ASANT website has all kinds of information about risk factors, warning signs, and prevention or delay of symptoms.
First Link also has information for caregivers. Gordon says the progress on the psychosocial front over the past 30 years includes greater recognition of the help provided by family members or other paid or unpaid caregivers. This in turn has shone a light on the stress and difficulties caregivers endure, which can circle around to affect the quality of care given.
“We understand more about the kind of supports that people need for sure, both for the person who is directly affected, but also for the people providing care, like their families; and what their needs are in order to be able to support this person to the best of their ability,” she said.
“It’s one of those ‘ramps.’ Having your caregivers understand why you’re repeating yourself, and not reacting with anger or a negative emotion, can help you in the long run.”
Anyone with questions or concerns can reach out to First Link via phone or email, or by referral from their healthcare provider. From there, there are agencies in Cold Lake, Bonnyville, and St. Paul who are prepared to provide local help in addition to the many resources provided by ASANT.
ASANT can be reached at 1-866-950-5465, or by email at reception@alzheimer.ab.ca.
Ten Warning Signs of dementia
Sign 1: Memory loss that affects day-to-day abilities
Are you, or the person you know, forgetting things often or struggling to retain new information?
It’s normal to occasionally forget appointments, colleagues’ names or a friend’s phone number only to remember them a short while later. However, a person living with dementia may forget things more often or may have difficulty recalling information that has recently been learned.
Sign 2: Difficulty performing familiar tasks
Are you, or the person you know, forgetting how to do a typical routine or task, such as preparing a meal or getting dressed?
Busy people can be so distracted from time to time that they may forget to serve part of a meal, only to remember about it later. However, a person living with dementia may have trouble completing tasks that have been familiar to them all their lives, such as preparing a meal or playing a game.
Sign 3: Problems with language
Are you, or the person you know, forgetting words or substituting words that don’t fit into a conversation?
Anyone can have trouble finding the right word to express what they want to say. However, a person living with dementia may forget simple words or may substitute words such that what they are saying is difficult to understand.
Sign 4: Disorientation to time and place
Are you, or the person you know, having problems knowing what day of the week it is or getting lost in a familiar place?
Have you ever forgotten what day of the week it is or can’t remember why you went into your bedroom? It happens to all of us. People living with dementia can become lost on their own street, not knowing how they got there or how to get home.
Sign 5: Impaired judgment
Are you, or the person you know, not recognizing something that can put health and safety at risk?
From time to time, people may make questionable decisions such as putting off seeing a doctor when they are not feeling well. However, a person living with dementia may experience changes in judgment or decision-making, such as not recognizing a medical problem that needs attention or wearing heavy clothing on a hot day.
Sign 6: Problems with abstract thinking
Are you, or the person you know, having problems understanding what numbers and symbols mean?
From time to time, people may have difficulty with tasks that require abstract thinking, such as using a calculator or balancing a chequebook. However, someone living with dementia may have significant difficulties with such tasks because of a loss of understanding what numbers are and how they are used.
Sign 7: Misplacing things
Are you, or the person you know, putting things in places where they shouldn’t be?
Anyone can temporarily misplace a wallet or keys. However, a person living with dementia may put things in inappropriate places. For example, an iron in the freezer, or a wristwatch in the sugar bowl.
Sign 8: Changes in mood and behaviour
Are you, or the person you know, exhibiting severe changes in mood?
Anyone can feel sad or moody from time to time. However, someone living with dementia can show varied mood swings – from calmness to tears to anger – for no apparent reason.
Sign 9: Changes in personality
Are you, or the person you know, behaving in a way that’s out of character?
Personalities can change in subtle ways over time. However, a person living with dementia may experience more striking personality changes and can become confused, suspicious or withdrawn. Changes may also include lack of interest or fearfulness.
Sign 10: Loss of initiative
Are you, or the person you know, losing interest in friends, family and favourite activities?
It’s normal to tire of housework, business activities or social obligations, but most people regain their initiative. However, a person living with dementia may become passive and disinterested, and require cues and prompting to become involved.
And one more sign to be aware of: Challenges understanding visual and spatial information
Are you or someone you know having problems seeing things correctly? Or coordinating visual and spatial information?
Do you or they have double vision? Or are there issues navigating space, or placing things easily and correctly on a table, such as a pencil or mug? Sometimes dementia can be the cause of these issues, and it’s important to see a doctor and eye specialist to get everything checked out.
If you are concerned about any of these signs, the next step is to talk to your doctor. Only a qualified healthcare provider, after multiple assessment and tests, can confirm whether you or someone you know has dementia.
