When your loved one receives a diagnosis of dementia, you can feel a mix of emotions. You might feel a bit of relief because you finally understand what has been happening, grief for the future and a desire to soak up all the memories you both can. A dementia diagnosis can also be overwhelming, but there are people on your team who are there to help you take things one step at a time.
Thanks to more awareness from family caregivers, dementia is being diagnosed earlier on in the disease as compared to even just a decade ago. An early diagnosis is key to getting you and your loved one the assistance and support you need to navigate the months and years to come. Your first stop? The doctor.
Here are eight questions to ask the doctor after a dementia diagnosis (either primary or neurologist).
What type of dementia does my loved one have?
While Alzheimer’s disease makes up a majority of dementia diagnoses in older adults, it is not the only type of dementia. Other types of common dementia include vascular dementia, caused by stroke, Lewy Body disease, frontotemporal dementia, and Parkinson’s dementia.
Each type of dementia includes a progressive decline in cognitive skills and memory. However, each type also has unique challenges that can come with it. Knowing the name of the dementia your loved one has can help you become a better advocate for them by understanding more about that specific condition.
Where can I turn for reliable information about this type of dementia?
Your loved one’s physician will be your main contact for specific medical questions, but you can also look to reliable sources of information online or in your community that can also help you know what to expect and to make decisions. Ask for websites and local resources or organizations that your loved one’s doctor recommends on account of their reliable information and caregiver support.
What were the key factors that you noticed in your exam that led to the diagnosis?
Diagnosing dementia is a complex process and while you don’t need to know everything about the exam to understand how your loved one performed, it can be good to know what deficits they demonstrated under evaluation.
Dementia is not just memory loss. In fact, the condition affects several parts of the brain. Performing complex tasks, such as managing a budget or a big project at work, can be nearly impossible in the early stages of the disease. It can be helpful for you to see that while your loved one’s memory is still mostly intact, they are struggling with organizational skills, critical thinking, or judgment.
What are safety concerns I should keep in mind now and in the next 6 months?
Many adults living in the earlier stages of dementia can live at home with minimal support. However, safety becomes a paramount concern among family members and senior care professionals. Your doctor can give you red flags to look for that might indicate a safety concern is on the horizon.
In the meantime, you can start to research quick DIY adjustments to your loved one’s home that might make it safer for them to live independently. This can include adding a video doorbell, downloading a medication reminder app to their phone, and keeping weather-appropriate clothing in their closets and dressers.
What medication do you suggest? What are the side effects?
While Alzheimer’s disease and most other dementias are not curable, there have been major strides in treatment over the past years. Ask your loved one’s doctor what treatment plan, including medications, they plan to start with. More importantly, be sure to consult with them regarding any side effects to look for.
Common side effects of dementia medication can include vomiting and loss of appetite, which means you might want to pay close attention to your loved one’s weight and nutrition intake initially when they begin taking it. Try protein shakes or smoothies if they can’t handle a full meal three times per day, or have healthy snacks in the house they can grab when they do feel like eating.
Another common side effect of dementia medications is a disruption in sleep patterns. Unfortunately, dementia itself also causes sleep disruptions, making this side effect even more challenging. Work with your loved one to get them into a bedtime routine that includes a consistent bedtime with familiar steps that cue the body that it is time to sleep.
How can we begin planning for the future?
Thanks to early diagnosis, many adults living with dementia are able to be an active part of their own future planning. They can have candid conversations with their loved ones about what they want and what they don’t want. In addition, they can ensure their affairs are in order by pulling together their advance directives and Power of Attorney designations. They can even tour and help choose a memory care community that will keep them safe and comfortable when they are no longer able to do so independently.
Planning for the future can seem like a monumental task, especially when you are coping with the emotions of the diagnosis. Get the physician’s recommendations for your first few steps, which will likely include getting the legal side of things in order. Then, you can work on the next steps once that is completed. Tackling tasks little by little can help you feel more in control of the process.
What about a memory care community? When do we start thinking about that?
Memory care communities are specialized senior living residences that cater to those living with cognitive decline. These communities are often safe havens for adults who can no longer safely live at home and can provide peace of mind for family caregivers. However, you might not need to consider memory care right away, especially if your loved one is in the early stages of the disease.
Now is the time to begin seeking out recommendations from your loved one’s doctor so that you can research costs and begin speaking to a financial advisor to develop a plan. This way, you aren’t overwhelmed with the financial part of the research when it is time to begin planning a move. If your loved one is able, involve them in the research and touring as well. It can help them feel empowered while they are still in control of their own wishes.
Where can we find support groups for caregivers and for my loved one?
Dementia support groups are very helpful for those living in the early stage of the disease, as well as for caregivers. Your loved one’s doctor can point you to caregiver support groups and living with dementia support groups that are held in person around you. Consider attending at least a few sessions before you decide it isn’t for you. Support groups not only offer emotional support and encouragement, but often provide educational materials and resources for family members.
When you’re ready to tour a memory care facility, we’d be honored to show you around The Cottages Memory Care at The Glen for those living in, or wanting to move to, Shreveport, Louisiana.