A diagnosis of dementia can bring a range of emotions to both the individual diagnosed and their family- fear, anger, possibly reassurance, but almost always, uncertainty. It can be difficult to understand what dementia is and what it means for the future in regards to life, care and life expectancy. With no cure and fluidity in symptoms, it is a particularly difficult diagnosis and often brings more questions than answers.
Dementia is an umbrella term used to describe a group of Neurocognitive diseases. At this time, there is no cure or vaccination for any of these diseases, unfortunately. These diseases include:
Other diagnoses that you might hear are mild cognitive impairment, major Neurocognitive impairment, or Young Onset (or early onset) Dementia.
What these diseases have in common is their impact on the brain and how these changes impact an individual's cognitive function. A few things to keep in mind are:
There is so much that is unknown, even by researchers and physicians. According to the Alzheimer’s Association, Researchers believe there is no single cause. Dementia can impact any person, at any age, and with any background.
Predictors and risk factors may or may not be avoidable. Some unavoidable risk factors include:
Some protective measures include:
Luckily, more attention is being given to dementia as a public health issue and clinical trials are regularly being done to find answers.
While there are unknowns, there is information that can help guide families impacted by a dementia diagnosis. Oftentimes, we hear of dementia being grouped into stages. However, it is important to keep in mind that cognitive decline looks different for everyone. Any given individual may experience a symptom that someone else does not experience or experiences at a different time within the disease process.
While stages can be difficult to specify, there are ways to group symptoms and offer guidelines as to what to expect.
Early Stages: In the early stages, an individual will experience mild symptoms. They may be so mild that not everyone notices the changes.
They may also experience changes in mental health such as anxiety or depression. In the early stages, many people are able to utilize coping strategies such as reminders and maintaining routine. People are able to manage most activities of daily living and instrumental activities of daily living, perhaps with some additional support.
It’s in the early stages that caregivers should begin to pay attention to safety concerns. Because of the unpredictability of dementia, you don’t know when someone may forget to turn the stove off or become lost while driving.
Middle Stages: People with middle stages of dementia will experience the symptoms of the early stages with more frequency and intensity. Symptoms generally begin to impact an individual’s ability to manage day to day tasks. Symptoms may begin to include:
Caregivers may begin to notice changes in their loved one’s ability to manage their personal care as well. Family or other supports tend to become more involved due to lapses in their loved one’s ability to manage independently.
Late Stages: Late stages are generally when symptoms continue to progress and begin to turn into more physical symptoms. These include:
In the later stages of dementia, a provider may recommend care providers such as nursing home care or home care. (It’s important to note that even individuals with advanced dementia can age in place if they have the right support.) They may also suggest hospice care to offer support to both the individual and the family members through the end of life.
It can feel overwhelming to see such an extensive list of symptoms- many of which are scary or unnerving. It’s important to remember that not everyone will experience each symptom. Documenting your loved one’s symptoms may help their provider understand how the disease is impacting them and manage symptoms as the disease progresses. Some specialists that you might consider adding to the medical team in addition to a primary care physician to help manage symptoms include neurology, psychiatry, or a geriatric doctor.
No matter where a person falls within the stages of the disease, it’s important to keep quality of life at the forefront. Consider ways to support independence and dignity, no matter the level of support someone may require.
Unfortunately, there is no clear cut answer to know when each symptom will appear and there is no cure. Often, when a person is diagnosed, the disease has already begun making changes in the brain, and there is no way to determine for how long those changes have been occurring. The life expectancy of someone with dementia is anywhere from 2-20 years.
Different types of dementia, progress in different ways. For example:
Pay attention to quick changes in your loved one’s cognition. Consider keeping a log of your loved one’s symptoms. This can help detect changes and understand triggers for changes.
Some families struggle with not knowing the prognosis, or survival rate. It’s normal to feel fear in times of uncertainty. Caregivers may struggle to make long term plans for the future and may struggle with their caregiver endurance. Caregivers are in a position of being in a long bereavement period as they see the changes slowly occur in their loved one. They may also experience feelings of wanting their loved one to be at peace.
Unfortunately, there is no clear cut road map to understanding dementia. However, there is much that can be learned about the disease and support options. When it comes to uncertainty, knowledge is power. The more you know about dementia, the more you can be in control of what to expect.
A Certified Dementia Practitioner and expert in Gerontology with over a decade of experience in elder care, including home care and senior living.
Ready Set Care is creating a community to provide guidance for anyone caring for an aging loved one.
If you know someone that could benefit from our website, click the share icons below
or copy link below