Any health diagnosis can come with confusion, fear, frustration, disappointment, even anger. When that diagnosis is Alzheimer’s, those feelings are a daily reminder of the unknown. With no cure, even with more patients receiving an early diagnoses, a sudden onset of confusion can be a stark reminder of what the future inevitably holds. Patients are faced with a daily struggle to maintain their independence.
Alzheimer’s is a progressive disease marked by increased memory loss and confusion, problems recognizing family and friends, inability to learn new things, difficulty carrying out multi-step tasks such as getting dressed, problems with coping with new situations, hallucinations, delusions and paranoia, and impulsive behavior (National Institute on Aging). In the early stages, memory loss and confusion may be mild and vary day to day. In late stage Alzheimer’s, patients may be unable to hold a conversation or recognize or respond to their environment (Alzheimer’s Association).
Gradually, patients with Alzheimer’s and other forms of dementia will see a loss of freedom and autonomy. Patients who were once productive, thriving, healthy adults will need help with basic activities for daily living like cooking, getting dressed, or driving. Patients in the late stages of the disease will need around-the-clock care. This degeneration of cognitive and executive functions has a drastic impact on the quality of life for patients, especially those in early stages that can recognize the signs and can see their own deterioration.
Harry Urban and Rick Phelps shared their personal stories in an interview by Anne-Marie Botek for a recent article published on AgingCare.com. The two were diagnosed with early onset Alzheimer’s and met in an online support group, “Memory People”, a group Phelps created after his diagnosis. Urban and Phelps now tour the country conducting seminars to educate the public on what life is like with the disease.
Urban and Phelps are working to educate caregivers on reasons behind some of the behaviors exhibited by family and friends with the disease. Faced with the reality of their own futures, the pair hope to continue the seminars as long as the disease allows.
In the article, the two answered some of the most common questions they are asked by caregivers. When asked about what it is that frustrates him, Urban replied, “Making a decision on something. Even if I have strong opinions about something, if you give me choices, I get frustrated. Going to a restaurant and being faced with so many options, I get annoyed. Driving – because I get so confused – I don’t know which lane to be in, whether to go left, right or straight.”
Driving is a complex task requiring the use and control of physical and cognitive domains. Patients diagnosed early on with Alzheimer’s may still have the ability to drive for years. However, because of the slow progression of the disease, changes in driving ability may be difficult to recognize.
“It’s important to understand that I don’t understand,” Phelps explained. “I don’t have any idea why I forget some things and remember others. It’s not intentional – I just don’t have the ability to realize what I’m doing wrong.”
This sense of confusion and lack of mental clarity can make driving dangerous for patients and the public. Driving, however, provides a strong sense of autonomy and independence. For this reason, more and more clinicians and caregivers are turning to driving simulators to monitor driving fitness in patients with Alzheimer’s. Driving simulation provides a controlled, safe environment to determine when a patient may need to consider alternatives to driving.
DriveSafety has certified technicians that can work alongside a clinical team to evaluate patients and show progress or degeneration of driving fitness over time. Clinical simulators can provide subjective feedback making the difficult decision to cease driving easier for patients and family members.
Call DriveSafety today to schedule an appointment with a certified technician.
Original article: “People with Alzheimer’s Share their Perspective” by Anne-Marie Botek www.agingcare.com