When a loved one is diagnosed with dementia, the experience can be difficult to process. You may wonder what to expect, how to best support them and how you can manage the demands of caregiving. Lynnette Dunn, MSW, a social worker at Piedmont Sixty Plus Services, shares what to expect during each stage of dementia and how to care for yourself as a caregiver.

How to support a loved one during the early stages of dementia

To support a loved one in the early stages of dementia, Dunn recommends allowing them to remain independent for as long as possible while being mindful of safety.

“Try to be there as a support for your loved one and help them to fill in the gaps they may be experiencing, but allow them to remain independent where able,” she says. “A very important aspect is to make sure they remain safe and that the things they do allow others to remain safe as well.”

This early phase is also a good time to plan for the future with your loved one.

“I always recommend families take the time to do their future planning in this stage,” Dunn says. “Meet with an elder law attorney if you haven’t already. Make plans for both of your futures, legally and financially.”

How to support a loved one during middle-stage dementia

Middle-stage dementia brings about some bigger changes.

“This is the stage where you will see more difficulties with managing self-care, word-finding and mood regulation in your loved one,” Dunn says. “Understanding this is dementia and not your loved one acting out or doing things on purpose is a great place to start. Reminding yourself that this is out of their control can help you to reset yourself in the situation and better assist both of you during a challenging time.”

Keeping yourself calm and collected will go a long way for your loved one.

“At this stage, a person with dementia is going to notice more from your actions and moods than they are from your words and may respond to that instead of what was said or asked of them,” she says.

Dunn tells caregivers that while dementia changes their loved ones, they are the ones who often make the most changes.

“You may have to pick up tasks that they have always done, such as paying the bills, preparing meals or taking care of the lawn or the car,” she says.

During this stage, your loved one may think they are living in a different period of time. If this happens, it may be best to join them where they are rather than try to reorient them.

“Entering their current reality may alleviate arguments and smooth out the hard parts of the moment,” she says. “For example, if your loved one thinks it is 1992 and wants to wear a sweater they have kept since then, allow them to wear it. As long their reality does not bring about stress, fear or anger, join them.”

If joining them isn’t possible, there are times when redirecting or an “ethical lie” may be appropriate.

“An example is that your loved one is asking about a beloved pet that passed years ago,” Dunn says. “The ethical lie may be that this pet is at the vet right now and you can pick them up in a few days. This prevents you from having to inform your loved one that they have passed and causing them to grieve that loss in the moment and potentially over and over every time they ask about the pet, but also explains why the pet isn’t in the home at the moment.”

How to support a loved one in the later stages of dementia

Unfortunately, as a person progresses through the stages of dementia, they lose the ability to do most things for themselves. This includes personal care and being able to speak, walk, toilet or express their needs. Dunn recommends the following during late-stage dementia:

• Ask for help. “During this time, you may need assistance with full-time care if your loved one is still in the home,” she says. “Palliative care or hospice care are great supports for both you and your loved one.”

• Offer joy and comfort. You could play their favorite music, look through old photos, discuss your memories with them, read their favorite book aloud or sing to them. This offers support beyond their basic needs.

• Talk to their health care providers. Talk to their doctor about how to best care for their physical needs, such as their food and water intake and physical limitations. Ask about the best ways to monitor for potential skin issues and ensure your loved one isn’t uncomfortable or in pain.

“Having professionals with you through this part of the experience allows you to transition from being a full-time caregiver to being their child, partner or spouse - their loved one again,” she says. “Allowing yourself to step back from caretaking and return to your previous loving relationship can ease both you and your care receiver.”

How to take care of yourself as a caregiver

Take time for yourself when you can. This can sometimes seem impossible to do, but self-care is essential.

“Simple things like taking a bath or long shower, getting your hair done, going to the gym, working on a hobby or having lunch with friends can be great for you,” Dunn says. “Try not to let the things you did before the diagnosis go away. It is easy for the changes of dementia to cause many to isolate unintentionally, but keeping your circle of support is important.”

She recommends finding a dementia caregiver support group.

“This is a safe place to discuss any concerns you have and get your questions answered,” she says. “It’s also a great place to feel supported and validated that you aren’t alone in your journey.”

Maintaining your health as a caregiver is also paramount.

“We often hear that a caregiver focuses on the care receiver and unintentionally neglects themselves,” Dunn says. “Keeping appointments with your primary care provider and taking your medications as prescribed is very important. If you aren’t well, it is harder to care for another.”

She also encourages caregivers to see a therapist or counselor to learn coping strategies for this phase of life. 

Support for dementia caregivers

Piedmont Sixty Plus Services has a helpline that’s answered throughout most of Georgia: 404-605-3867. Dunn also recommends learning more about caregiving through the National Institute on Aging and the Alzheimer’s Association.

“I also like to remind people that if they have met one person with dementia, they have met only one person with dementia,” she says. “Please know that these are generalized suggestions for each stage. Dementia has no set path, no set direction and no plan. Each person experiences dementia differently, so adjust your plans to their needs.”

Dunn adds, “Most importantly, please know you aren’t alone on this journey. We are here to help.”

We make getting great health care simple and convenient. Schedule an appointment today through your Piedmont MyChart account or our website.