Working with the health care team

Discovering more information about your loved one’s diagnosis and how it can be managed will help you to play a more active role in their care. 

Getting your questions answered

Your loved one’s health care team should take the time to explain the diagnosis, how it will progress, how it can be managed as well as making time to answer any of your questions. 

Communicating with doctors, nurses and other medical professionals can feel daunting and it’s easy to get lost and confused especially when you are worried about a loved one. 

Here’s some guidance about how to stay on top of managing your loved one’s care when working with members of their health care team. 

Write things down

Before the visit write down any questions that you have and spend time discussing the visit with your loved one to find out if there are things they would like to cover. Having a prepared list of questions will make sure that you cover everything you need to during an appointment or visit. 

Take a notebook with you to the appointment so that you can write down the answers. This will help you to remember all the important things that came up during the conversation. You can also ask if you can record the appointment so that you can listen to it again later and make a note of anything you missed.

In the next section we outline a list of questions that you can put to the health care team.  

Ask for clarity 

Don’t be afraid to ask for explanations of any medical terminology or acronyms that are being used. 

If you’ve read something in your research that you’re not sure about (including on the Lizzy app) you can ask the medical team to help explain or clarify it. 

Ask for help

Whilst we like to think Lizzy has a lot of good information on managing the care of someone with dementia there is lots of other good advice out there. Ask the medical team to provide advice on additional resources you can look at. 

Remember there is currently no cure for dementia. However, there are medicines as well as other treatments that can help to manage some of the symptoms of dementia.

Keep everyone updated 

Part of the challenge when managing the care of someone with dementia is keeping everyone updated on what’s going on. Particularly as there might be a number of different professionals involved in supporting your loved one as well as lots of interested family members and friends. 

We designed Lizzy to help make the process of keeping everyone up-to-date quick and easy. By adding people to the care circle you can use the care feed as a way to quickly record updates and keep everyone on the same page about changes in behavior, new symptoms, medication updates and appointment summaries. You can use the tags as a way to identify the different types of information so you can quickly find them again later. 

Questions to ask the health care team

Below we’ve identified some key questions that should be on your list for discussion with your loved one’s health care team. Using these questions can help give you a better sense of what to expect when caring for your loved one and how you can help them manage their dementia. 

Or you can download our handy doctor’s visit summary sheet to print out and record all the important information on.

When making an appointment

Booking appointments isn’t always straightforward and there are some important questions you can ask upfront that will help make sure you get to the appointment safely and on time, as well as know what to expect and anything you will need to bring with you. 

• What is the doctor’s full name and their title? 
• How do I contact their office? 
• Where is the office located? What is the address and what floor is the office on? Is there a room or suite number? Which entrance should I use? 
• Is the office’s location disabled accessible? How far will we need to walk to reach the office? 
• Is there parking available? Will I need to pay for parking? 
• Is it possible to reach the office on public transportation?  
• What should we bring to the appointment? Insurance information, medication records, contact information for other doctors, care journal, other items? 
• How long will the visit last? 
• May we record what the doctor says during the appointment? 
• Will support staff be available during the visit? 

Handling health insurance 

Navigating the world of insurance and what it covers is confusing. It’s best to try and get some upfront clarity on what to expect in terms of coverage and cost. Frustratingly Medicare does not cover some of the care that your loved one might need to help manage dementia but it will usually cover office visits with doctors and nurses. 

• Which insurance plans does the doctor/provider accept? 
• Do I need to get a referral to see this doctor? 
• Will the office bill the insurance company? Will we need to pay at the time of the visit? 
• Will there be a copay for the appointment? 

Understanding dementia 

As discussed in our course on Learning about the different types of dementia, dementia is an umbrella term for a number of different conditions that affect the memory and other mental abilities. Different types of dementia have differing symptoms and progress at different rates. It is important to ask the health care team about the dementia diagnosis so you know how to best manage your loved ones care. At the early stages of dementia it may not be clear what the exact diagnosis is other conditions such a urinary tract infections can also result in symptoms that look very similar to dementia. 

You can also ask about the stage of dementia as this will impact the kind of care and support your loved one will need. 

• What type of dementia does my loved one have? 
• Is it possible the symptoms could be related to a different condition? 
• What stage of dementia is my loved one at and what does this mean? 
• What is the expected course of decline? In memory? In other things?
• What plans should be made now to prepare for a time when my loved one might not be able to make decisions for themselves?  

Symptoms 

Knowing what symptoms are common with dementia helps you as a caregiver know what you should be watching out for and also understand how to manage them. 

• What are some of the common symptoms of their dementia and is there anything that I should watch out for?
• How can my loved one manage these symptoms and how can we help them? 
• If we notice a problem related to the dementia, who should we call? 

Care management 

There is no cure for dementia but there are ways to make living with dementia easier and to slow down the progression. Nutrition, physical exercise and emotional support are all important parts of dementia care.

Some medications can help to relieve some of the symptoms associated with the disease but they typically do not help to slow down the progression. 

You should also ask the health care team about issues surrounding your loved one’s safety, such as where they live and if they can drive.  

• What are some reasonable care goals for my loved one? 
• Are there any medications that might be helpful in managing my loved ones care? 
• What lifestyle changes can my loved one make to help manage the progression of their dementia or slow the decline? 
• Are there any activities that can make the symptoms worse? 
• What should we do if we notice that the symptoms are getting worse? 
• Is it still safe for my loved one to live at home? 
• Is it still safe for my loved one to drive? 

Additional support: 

Ask the health care team about additional resources they may be able to provide or have access to that they can offer. Managing dementia is difficult take all the help you can get!  

• What support services are available to my loved one and to me and other caregivers? 
• Can we contact you if we have any questions? 
• I’m worried about managing the costs of dementia care who can help me? 
• Who handles the health insurance questions and concerns from your office? 

Clinical trials: 

Depending on your loved ones diagnosis and condition there may be an option to participate in a clinical trial. If this is of interest you can discuss the possibility and the benefits with the health care team. 

• Are there clinical trials available that might be appropriate? 
• How do we find out if my loved one is a match for a trial? 
• How do we find out about new trials? 

Lizzy Care as a resource

We’ve done our best to include lots of useful and practical advice that can support you in your caregiving journey and we’re working to add more information all the time. However, we can’t possibly cover it all so talk to the medical team about other places you can find information and resources. 

If you have any questions about the information or guidance you find on Lizzy or there is something you’d like us to include please get in touch with us.