If you’ve begun caring for someone with dementia, you might be wondering what to expect and how to provide the best support. You probably have some questions about common dementia symptoms and what you can do to help.
The truth is, every dementia patient’s journey is unique. Dementia can begin with a person forgetting where they placed their car keys and progress to needing help with basic daily needs such as eating or using the bathroom. For instance, your mother may only need light support and assistance right now, while your friend’s uncle requires 24/7 care. A lot of this will depend on your loved one’s stage, degree of cognitive impairment, and recommendations from their provider.
That said, there are always ways you can offer your love and support no matter what stage of dementia they’re facing. To help you navigate caring for a dementia patient, we’ve provided information regarding what you might experience, along with some helpful dementia caregiver tips.
The guidance below was reviewed by Danielle Larkin, a doctoral-prepared Family Nurse Practitioner specializing in Palliative Care and an Assistant Clinical Professor in Nursing at Auburn University.
What to expect when caring for someone with dementia
It’s important to understand that there are stages of dementia that range from no impairment (Stage I) to a very severe decline (Stage VII). If your loved one is in the early or middle stage of dementia, they may only experience mild or moderate symptoms. But if they’re in the more advanced stage, they’ll likely have more severe symptoms and require intensive around-the-clock care. Depending on your experience as a dementia patient caregiver, you may find that you’ll eventually need additional assistance from a trained professional.
While dementia progresses differently for each person, your loved one may exhibit some of the following behaviors:
- Bouts of uncertainty, confusion, agitation, anger, or frustration
- Lapses in short- and long-term memory
- Inability to recognize objects
- Impaired reasoning, judgment, and planning
- A tendency to wander off or horde items
- Stints of physical aggression and verbal threats
- Inability to perform routine tasks like getting dressed and bathing
- Difficulty eating, swallowing, walking, or forming coherent sentences
Caring for a loved one with dementia
Watching your friend or family member cope with dementia can be difficult, but your love and support go a long way. For guidance, follow some of these dementia caregiver tips:
Consult with their provider
Before caring for someone with dementia, consult with their primary health care doctor or nurse practitioner. Their provider can give you a better understanding of their condition and how you can best assist them. This is especially important if you’re noticing behavioral problems, as this could be a sign that they’re experiencing pain or progressing in the disease process.
Keep it simple
When engaging, use simple words and short sentences. Use their name to address them and get their attention, and then speak slowly and clearly. If you’re telling them to perform a task, break it down into easy, manageable steps. But if you’re asking a question, try to avoid open-ended questions and instead ask yes or no questions. If they begin to get frustrated, distract and redirect, like suggesting going for a walk or eating a snack instead.
Set the mood
Even when times get difficult, it’s essential to set a positive mood and come from a place of love. You may find your loved one is easily agitated or confused, so focus on speaking in a reassuring tone, creating a calm and comforting environment, and showing your love with affectionate words and gentle body language.
Create a safe environment
As your friend or relative enters more advanced stages of dementia, you’ll want to clear their living space of any dangerous objects and obstacles. Consider putting new locks on doors and windows and installing safety locks on door handles and cabinets, especially those containing knives, scissors, matches, and other potentially harmful items. Also, remove any unsecured rugs, clutter, and extension cords that they could trip over, and put in handrails along the walls to help prevent falls.
Your loved one may get confused if the TV is blaring or too many people are talking. Limit distractions and maintain a peaceful and quiet environment to help redirect their attention. Also, make eye contact with them while you’re speaking or gently hold their hand to help keep them focused and engaged.
Establish a daily routine
Maintaining structure is a big part of dementia care, as spontaneity can sometimes heighten confusion or anxiety. Schedule certain tasks, like meals or activities, at the same time every day, and keep objects and furniture in the same places. This can help provide a sense of security and familiarity.
You might begin to notice that your loved one has begun to wander. There are several reasons why they might be doing this, but the main concern is keeping them out of harm’s way.
First and foremost, make sure they can be identified at all times. Give them an ID bracelet or sew a label into their clothes with their name, condition, and emergency contact details. If you live in a neighborhood, speak with your neighbors and give out your contact information in case they see them wandering alone. Another dementia caregiver tip is to set up security cameras around their property to help you monitor their activity and ensure their safety.
Studies suggest that music therapy can benefit dementia patients, helping to reduce stress, depression, and agitation. Listening to music can also help them express their emotions, engage with others, and elicit memories. Play different songs and see how your loved one responds. If they smile, start to dance, or sing along to certain tunes, play these songs more often.
Caring for yourself
To take care of someone else, you need to take care of yourself first. After all, you won’t be your best self if you’re feeling stressed, not getting enough sleep, or ignoring your own needs. Follow some of these dementia caregiver tips for your own well-being:
No matter how dedicated you are or prepared for the task, caring for someone with dementia can be a trying experience. There will be times when you might feel sad, frustrated, or even defeated. Find ways to relax and unwind and make time for yourself. That might mean taking a warm bath, going for a walk in nature, getting a massage, or curling up with a good book.
Take time to reflect
Watching your loved one navigate this new stage in life is an emotional journey. Some days are good, and other days aren’t so good, and that’s to be expected. Consider journaling or speaking with a close friend or therapist to help you work through your feelings and emotions. It’s ok to be sad about certain setbacks or diagnoses, but it’s also ok to celebrate the good times and happy moments. Give yourself the space to reflect on your experience as a caregiver.
Join support groups
Providing dementia care can be extremely rewarding but also challenging, and you’re not alone in your experience. Joining a support group can connect you with like-minded people who are facing the same ups and downs of dementia care. Support groups provide you with a safe space to speak with others, ask for advice, and find comfort.
Know when to ask for help
When it comes to caring for a dementia patient, it’s important to know when to ask for help. That might mean reaching out to family members and asking for support, assistance, or even a break. Or it could be recognizing that your loved one needs more advanced help and turning to a trained professional for around-the-clock care. Remember, you have your loved one’s best interests in mind, and asking for help is never a sign of defeat.
Being a dementia caregiver is a selfless and loving act. Make sure you take time for yourself so you’re able to show up fully for your loved one.