How To Support a Family Member With Dementia
You don’t have to do it alone!
If you’re reading this, you either have concerns about a family member’s memory or have a known diagnosis of dementia or cognitive difficulties. First and foremost, know that you are SEEN. This is my virtual hug to you. Supporting a family member with dementia can be challenging, especially if it represents a change in the dynamic of the relationship.
Maybe this is your parent who was always the one looking after you. Now the roles are reversed and you’ve become the caregiver. Maybe it’s your spouse and you worry how you can support them and how these changes will impact your relationship. No matter who it is, know that it’s ok to acknowledge the difficulties and some level of grief that go with supporting a family member with memory challenges.
That being said, you are not alone and there are many ways you can support your love and even provide activities and utilize strategies to help minimize the deficits and improve function.
Educate Yourself
Learn as much as you can about dementia to understand the condition, its progression, and how it may affect your family member. Not all memory difficulties are the same! Does your family member have a dementia or Alzheimer’s diagnosis? Are their memory difficulties acute and related to something that happened recently? (ie: fall or illness) Do they just have some general memory difficulties?
If they have a diagnosis, look into the specifics of that diagnosis, what the symptoms are and strategies for that specific type of memory loss. I highly recommend reaching out to a Speech Language Pathologist who specializes in older adults and cognitive communication deficits. I provide free 15 minute zoom consultations as well as Family Education sessions that can be helpful when looking at the needs of your family member specifically.
Try not to be overwhelmed by “doctor Google.” Just because Jane Smith’s husband’s dementia looked like XYZ does not mean that your family member’s will look the same. Get general information, but know that every person is different in how they are affected.
Communicate Effectively
This is my number one recommendation for families and something I coach on A LOT. Use simple and clear language. In addition to having difficulty remembering, many adults with cognitive communication difficulties have a hard time processing auditory information. Simple language in conjunction with visuals such as gestures or pictures can be very helpful.
Be patient, listen actively, and avoid arguing. Does it really matter if your mom thinks Bill Clinton is the president? Pick your battles. If Grandma thinks that the home health nurse who comes in to help her is her friend from book club 20 years ago, it’s not going to hurt her to keep thinking that as long as it doesn’t impact her following directions and doing what she needs to do with the nurse safely.
Non-verbal communication, such as facial expressions and body language, can also be important. Provide a direction or information verbally and then give them time to process and think before saying it again. Using visuals/pictures while they are processing what you said can be very helpful.
Establish a Routine
Create a consistent daily routine to provide a sense of structure and familiarity. This can help reduce anxiety and confusion. We all love knowing what to expect from our day. Having some sort of visuals that help with understanding of the routine are great as well.
Keep in mind. When the routine is off or changes, this can be incredibly challenging for people with dementia or cognitive communication difficulties! Imagine if you were going about your day and someone came in and swooped you up, put you into a car, was speaking a foreign language and you didn’t know what was happening… You’d feel upset and out of control. This is how someone with dementia might feel with a change to their schedule. As much as possible, foreshadow the change. Use visuals (picture of where they’re going or who they are going to see) and lots of patience
Utilize preferred habits. If your husband believes he is still working even though he’s been retired for years, it’s ok for him to think he’s going to work and going to discuss some things with a client. (Who may actually be the doctor). Meet their brains where they are at.
If the memory difficulties are mild, consider a more therapeutic or prevention/wellness approach. Consider doing games or challenges related to medication management, remembering personal information, etc… Challenge them just enough with questions without it becoming overwhelming.
Provide a Safe Environment
Make the living space safe by removing tripping hazards, using labels, and securing potentially harmful items. Consider installing safety features like handrails or grab bars.
Think about whether or not the family member is safe in their current home environment. My mom will say that she waited too long to move my grandma to memory care. If your family member is able to, have a conversation with them about moving to an assisted living at some point. Give them options and ask what amenities they would like if they could have them. Work with other family members to help you work through this. In my experience, leaving their home can be one of the most difficult changes for any older adult, but especially an adult with memory difficulties.
Assist with Daily Tasks
Help with daily activities like dressing, grooming, and eating. Break tasks into smaller, manageable steps and be patient. Along with this though, try not to make things too easy. Our brains need to be challenged and worked in order to maintain functioning. Consider giving your family member a “job” or task that they can take care of each day without too much difficulty. People in memory care facilities who are given jobs within the setting have shown less loss of skills and have better mental health.
Encourage Independence
This goes along with the last one- try to provide opportunities for independence and some level of challenge in completing daily tasks within the home. (always making sure they are safe.) Allow your family member to do as much as they can independently. Offer assistance when needed but avoid taking over tasks completely.
Stay Calm and Flexible
Dementia can be unpredictable, and behaviors may change. One of the biggest things that helped my family when working through my grandmother’s Alzheimers was understanding that the unpredictability and sometimes hurtfulness of her behavior was not really her. It was simply a result of her brain changing. As much as possible, stay calm, be flexible, and adapt to their needs.
Provide Social Interaction
Isolation can significantly impact risk for dementia. Encourage socialization with family and friends. Social connections can help maintain cognitive function and improve mood. People with memory difficulties sometimes pull away from social things as they become more aware of their memory challenges. It’s important to encourage and provide many opportunities for social interaction in order to stave off further deterioration and when thinking about prevention and wellness prior to any noted memory difficulties.
Make it a family affair. I had a routine of visiting my grandmother every Saturday afternoon. I went by myself as it was a bit of respite for my mom who visited nearly every other day. At the time I was in college. I would bring my younger cousins or my dog and we would just hang out, listen to music or play games alongside my grandmother. Make it a routine and it will become a welcomed part of your schedule!
Take Care of Yourself
Caring for someone with dementia can be emotionally and physically demanding. Make sure to take breaks, seek support, and prioritize your own well-being. If your family member is not in a memory care or assisted living, consider utilizing respite care and/or asking other family members for help.
You are the best caregiver when you are in the best mental health. That means providing yourself with breaks and healthy outlets. When a family member has memory difficulties that progress it’s like you lose a little bit of them as time passes. It’s ok to grieve the relationship you had or the person they were. Just know that just because they can verbalize the memory doesn’t mean that it’s not there or the general feeling is lost for them.
Seek Professional Help
Consult with healthcare professionals, such as doctors, therapists, and support groups, for guidance and assistance. They can provide valuable resources and support. I recommend speaking with a Speech Language Pathologist who specializes in cognitive communication deficits. As SLP’s we can provide direct therapy, family education, and consultation on prevention and wellness. You don’t have to do it alone! Reach out for a consultation or family education to help guide you.
Remember that each person with memory difficulties is unique, and their needs may vary. Tailor your approach to your family member’s specific situation and preferences. Additionally, consider involving other family members and friends to share the caregiving responsibilities and provide a strong support system. Reach out to your local Aging and Disability Resource Center. They will have social workers and staff who can help you navigate insurance, housing, and more.
You don’t have to do it alone!