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What is a Dementia Roadmap?

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By Sylvana Rinehart, Certified Concierge Care Advisor at Concierge Care Advisors

Roadmaps are not a thing from the past in our new electronic world. They can be helpful and informative, especially when dealing with Alzheimer’s and related Dementia. Alzheimer’s Disease is a neurodegenerative disorder that poses one of the most formidable healthcare challenges of the 21st century. Of the 5.5 million Americans currently diagnosed with Alzheimer’s disease, 5.1m are over the age of 65, a population expanding by 10,000 people every day. This can prove to be a long and unknown journey for most caregivers and family members. There is no straight path through the stages as each person with Alzheimer’s or other dementia related disorders may progress differently and in their own time. A “roadmap” is a big picture of the road ahead, with directions and tips about what to expect that can be both helpful and reassuring for the millions of caregivers. Most importantly, it can provide us with indications of when we should turn to professional help.

Let’s get started. If you are worried about a loved one’s forgetfulness and suspect that their memory issues are interfering with everyday life, it will be useful to gain an understanding of the stages of Dementia so you can better determine where your loved one is now.  You might find that it’s time to seek the professional help of a physician and get a diagnosis. Most forms of Dementia are non-reversible with a few exceptions. Knowing what you are dealing with will help you and your loved one plan for the future.

Definitions help. In the elder care field, we often use the words Dementia and Alzheimer’s interchangeably. Dementia is a general term referring to a loss of cognitive function like remembering, thinking, and reasoning – severe enough to interfere with everyday life. It is not a specific disease, but an overall term describing a wide range of symptoms. It is not a normal sign of aging as it is caused by damage to the brain from disease or trauma.

Alzheimer’s disease is the most common cause of dementia. Other causes include vascular dementia, Lewy Body dementia, frontotemporal dementia, and Parkinson’s induced dementia.

Resources help. I have found that the Alzheimer’s Association has an array of literature and information readily accessible. They also have a 24/7 hotline one can call for advice. I often give families and loved ones the “10 warning signs” when they tell me they are not sure of what is going on with their loved one. These are easy to understand, and one may have one or two of the functional deficits and have the early stages of Dementia, or they may have a combination and be more in the mid stages.

Early onset signs. During the Early Stage of Dementia there is sometimes an “independent phase” and an “uncertainty phase.” Someone with dementia at first wants very little help or interference from their family members and friends. They can still function relatively well by looking and writing in the calendar important events, doctors’ appointments and outings. They can navigate at home and in the kitchen fairly well.

Some have a condition called anosognosia which is a condition that renders us unable to perceive our own impairment. These individuals have a hard time understanding and admitting that they have memory loss and don’t understand what they don’t know. I had a client who always wanted to be prepared and wanted me to let her know ahead of time when I would be coming and what I would be asking her so that she could be “fully prepared”. I confess that I tried hard to prepare her, but after a while she would get after me because according to her, she wasn’t prepared, despite my phone calls and reminders.  They then believe that any mistake or confusion is caused by other people which may lead them to become paranoid or suspicious.

Those who understand that they might be having some memory issues accept things with grace but will then come up with a good line, as an example:  “Thank you for coming by to see me, but really I can manage just fine on my own – I always have and always will!”  In both cases, individuals with dementia will do their utmost to mask the true extent of their confusion and memory loss so that they can preserve their dignity for as long as possible.

“Uncertainty Phase.” For individuals with complete anosognosia, they will stubbornly persist in believing that their confusion and frustration are due only to other people’s mistakes, and even those with partial anosognosia will begin to doubt themselves. They start to find themselves at a loss as to what to do and how to complete tasks. They will start asking: “When are you coming back?”, “when will I see you again?” This is when your loved one will need more support at home for meals, hygiene, housekeeping and outings.

In the mid stages of Dementia there might be a “Clingingness” Phase. Confusion starts settling in and these individuals start having a hard time being alone and want to “hold on to you” as much as possible. Days and time get muddled up and you might be getting phone calls at all hours of the night asking what time their next doctor’s appointment is going to be; frequent or incessant repetitive questioning.

In the late stages of Dementia your loved one might not recognize you or others by name. This does not mean they don’t know or feel who you are. They might be using “word salad” and mixing words or remain silent most of the time. Frequent or total incontinence sets in. During this phase, it is important to note that the individual is still attuned to the emotions of others and can enjoy companionship, respond to physical touch and music.

My hope is that the above condensed outlines of stages and phases show that a roadmap can be a useful tool when dealing with a loved one with a Dementia related illness. It can help you put in perspective what you are observing and help you understand that you are not alone in this journey; and that there is help along the way. In 2016, The Dementia Action Collaborative of Washington State, comprised of professionals, individuals with Alzheimer’s, and care givers, put together the Dementia Roadmap which is very comprehensive, with tips about what to expect and actions to be taken as well as where to find help.

To view the Dementia Roadmap on line, please ask any of Concierge Care Advisors to either send you our link or to give you a hard copy.

Alzheimer’s Association Washington State Chapter, Serving Washington and Northern Idaho: or 1-800-272-3900 (this is also the 24/7 hot line)


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