Understanding dementia and all its complexities cannot be done in one article, or neither by reading an entire book. Hence is why there are countless people who have dedicated their careers to helping us better understand this debilitating condition. There are many books out there, and one of the best, and most easy to read books I have found is called “Experiencing Dementia” by H. Norman Wright. It is a short, easy to read book and very reasonably priced on Amazon (less than $5.00)
The author has been diagnosed with early stages of dementia after years of being a caregiver for a handicapped son and eventually, his own wife. After doing his own research, both academically and experientially, he skillfully describes the condition in an easy to understand manner.
Dementia is not a disease in itself; but rather a group of symptoms that result from other sources, or diseases. It is basically an ‘umbrella term’ used to describe the many symptoms that interfere with normal life functioning. There are several types of dementia, with Alzheimer’s accounting for somewhere between 60-80% of all cases (over 5 million cases). The other most common types of dementia are:
- Vascular Dementia
- small silent strokes
- Dementia with Lewy Bodies
- Abnormal clumps of protein form in the brain causing never cells to degenerate
- Frontotemporal Dementia
- The area of the brain responsible for behavior is gradually eroded
- Normal Pressure Hydrocephalus
- Used to be called ‘Water on the Brain’ because of buildup of fluid on the brain
- Mild Cognitive Impairment (MCI)
- Change of IQ functioning
What our loved ones with dementia are facing:
- Memories and abilities that they have worked their entire life to obtain, are being slowly stolen from them
- Great emotional pain: for both Receivers of Care and Givers of Care
- Loss of self: one of the greatest losses a person can face
- Emotional issues and personality changes as a result of the part of the brain responsible for emotions and memory is affected (the amygdala)
- Sleeplessness due to the brain stem being affected
- Loss of memory is extremely frightening; our memories give us life!
Dementia is a terrible thief. It robs people of their memories, abilities, personalities, coping abilities, sleep, and eventually physical functions. How couldn’t this change a person? It is so out of their control, we must remember that. It helps me to put myself in the place of a dementia patient, and try to imagine how I would feel. Yes, this is a scary exercise. But if it’s scary just thinking about it, imagine how it is to live with it! Bone chilling to consider.
One fact is certain. Regular, consistent, positive visits from family and friends is the biggest source of relief for our loved ones, even if they don’t remember it later. Imagine how frightened they must feel. Spreading out visits will help with that. Using the Community module in the Genus™ app, you can look back over past data and see how you and your care circle are doing with providing consistent contact with your loved one. You can correlate that to other date you might be tracking, such as physical mobility and/or mood. Then using the calendar function, you can easily plan visits so that they don’t overlap too much and are spread out to best benefit the patient.
Using the Moments module, you can take pictures of special people, places and events that will help stimulate positive conversation during your visits. Using your smart phone during a visit, you can share the photos with your loved one, or just listen to some music. We have also taken pictures of bible verses images and other inspirational sayings that we use when visiting my mom. She is always grateful for the wisdom shared and seeing it in writing is different than hearing it from a family member. More authoritative and less “bossy”.
Yes, dementia is a thief. But armed with information and tools, we can minimize the damage and provide the best love and support we can for our loved ones.
If you are involved in caring for an older adult, maybe suffering from Dementia or Alzheimer’s, or possibly suffering from a physical disability; you already know how difficult communicating with them can sometimes be. It is understandable that our Receivers of Care can perceive us as ‘bossy’. It is also understandable that we won’t like that perception one bit!
It can be so overwhelming deciding what kind of outside help to hire for your aging loved one. Who should you hire? How do you find them? Are they qualified? Can they be trusted to care for your parent? What questions should you ask? What is the cost? How do I find the best care possible for my parent?
Most people want to be independent and do not want to be a burden on the family, hesitating to ask us for the help they need. When dealing with a family member who still has fairly strong cognitive abilities, we can only know where to provide help if we can teach our loved one to ask for help. Of course we will see some obvious areas where help is needed, but in order to provide the best possible care, we need him/her to be open with us.
The sudden realization that you’re a caregiver can be a difficult one. You may be asking yourself “What’s needed of me?” and “Where do I begin?” Fortunately, there are resources like the Caregiver Action Network (CAN) to help you get started. Visit their post “
While caregiving can feel isolating, there are countless others going through the same things you are. There’s a lot to learn from those who have been in your shoes. From funny stories to embarrassing moments, and those that will make you tear up,