Living with Dignity: A Guide for People with Dementia and Their Caregivers

Is someone you love living with dementia? It can be tough when everyday tasks become harder. But remember, you’re not alone. This helpful guide is for both people living with dementia and those who care for them. Let’s explore ways to maintain dignity while living with dementia.

Understanding the Changes

When someone has dementia, there’s usually a natural transition over time. A loved one, like a spouse or an adult child, might start helping more at home. They might help with:

• Taking medicine
• Cooking meals
• Managing money
• Driving
• Keeping track of appointments
• Staying safe at home

This change can be hard for everyone. Both the person living with dementia and their caregiver might feel sad about the loss of independence. It’s completely normal to feel this way, but there are things you, as a caregiver, can do to help.

Making Choices Helps Maintain Dignity

Having a say in your day is important. It helps people feel good about themselves. We call this autonomy – the ability to make meaningful choices, even if your loved one needs help with some tasks. Here are some simple ways to allow your loved one make choices:

• Pick what to wear: “Would you like the blue shirt or the green one today?”
• Choose their meals: “Do you want eggs or oatmeal for breakfast?”
• Decide on activities: “Should we take a walk or listen to music?”
• Select TV shows or movies to watch
• Choose which family members or friends to call
• Pick the order of daily tasks: “Would you like to shower before or after breakfast?”

Even small choices can make a big difference. For example, when it’s time to take medications that aren’t time-sensitive, you could give your loved one a choice about whether to take them before or after breakfast. The simple act of making a choice can boost their mood and help them feel more in control.

Tips for Supporting Independence

Holding onto independence can help maintain dignity while living with dementia. Here are some simple ways to support your loved one’s independence.

Stay Active: If they loved cooking but it’s not safe anymore, they can help in other ways. Your loved one might prepare fruits and vegetables or help mix ingredients that have already been measured. Other activities could include:

• Folding laundry
• Watering plants
• Setting the table
• Sorting mail
• Light dusting or sweeping

Share Stories: Talk about your life together. Your shared experiences are important and interesting. Some people with dementia remember things from a long time ago better than recent events, so sharing these memories can be enjoyable. You might talk about:

• Each of your childhoods
• Your first job
• How you met your spouse
• Favorite vacations
• Family traditions

Look at Photos: Pull out those old photo albums to spark memories and stories. It’s a great way to remember happy times and share them with others. Try to identify people, places, or events in the photos. Don’t worry if your loved one can’t remember everything – just enjoy the process of looking and talking about what you both see. Provide gentle reminders of what was going on the photo: “Oh, this is the picture from our family trip to Redlands!” 

Create a Memory Book: Write down or record your loved one’s stories. It’s a great way to share their life with family. There are services, like Storyworth, that send you questions about the past each week for your loved one to answer. After a year, they print all the stories in a physical book. This can be a wonderful keepsake for you and your family.

If your loved one can’t record their stories themselves due to their cognitive changes or inability to use technology, use an audio recorder and have them verbally share their stories. You or another family member can then transcribe – and lightly edit – the stories for safekeeping. This shared activity can create meangingful opportunities to regularly reminisce together and savor happy memories from the past. 

Processing Feelings: As a caregiver, you can honor how your loved one is feeling by first noticing how they are feeling. Rather than asking “How are you feeling?” which can be overwhelming to a person living with dementia, you can simply observe and reflect: “It seems like you’re feeling scared.” The beauty of these types of reflective statements is that you can’t lose! Your loved one will either confirm they feel that way or let you know they feel differently. Once they respond, you can use simple validating statements to reflect back what they said. Here’s an example of how this might play out:

Caregiver: “It seems like you’re feeling upset.”

Loved One: “Yes! I don’t understand why everyone thinks I need help all the time!”

Caregiver: “It’s hard to understand why people think you need help.” 

These types of discussions can help you both feel more connected and in sync with each other. 

Engage Senses: Try activities that use different senses:

• Listen to their favorite music
• Smell familiar scents like flowers or spices
• Help your loved one touch different textures around them like soft fabrics or smooth stones
• Look at colorful art or nature scenes.

Keeping Relationships Strong

Staying connected with others is important. Here are some ways to keep relationships strong:

• Have regular visitors, even if it’s for short periods
• Use video chats and calls to stay in touch with family members who live far away
• Participate in family gatherings or events, even if it’s just for a little while
• Join a support group for people with dementia to meet others who understand
• Maintain old friendships when possible, even if the activities you do together have to change

Remember, the relationships might change, but they’re still valuable and important.

For Caregivers: Taking Care of Yourself

If you’re caring for someone with dementia, remember to take care of yourself too:

• It’s okay to ask for help from family, friends, or professional services
• Join a support group to meet others in a similar situation
• Take breaks regularly – even short ones can help
• Keep up with your own health check-ups and appointments
• Maintain your own hobbies and interests when possible
• Learn about dementia to better understand what to expect

Taking care of yourself isn’t selfish – it’s necessary to be a good caregiver.

Maintaining Dignity & Respect While Living With Dementia

Living with dementia is challenging but there are many ways to keep living a meaningful life and maintain dignity and respect. In summary, remember:

• Small choices make a big difference
• Staying active is important
• Sharing stories connects people and keeps the memories alive
• It’s okay to ask for help when needed
• Your feelings and experiences matter

Remember, you’re not alone on this journey. If you are concerned about dementia, do not hesitate to contact Idaho Neuropsychology. We are here to provide expert guidance and compassionate support throughout your journey.