Explaining Dementia Disease

Our home is faced with explaining dementia to my mother-in-law.  Just when we think we have her understanding, we discover otherwise.   It is not easy and navigating the healthcare for her is maddening.  The disease is brutal as we watch her fade into confusion regularly.  Just in the time she has been here (8 months — it feels like 8 years) we have seen a serious decline and keeping her healthy and happy is a struggle.  We knew intellectually that moving her from her home of over 50 years was going to take its toll.  What we were not prepared for was how that was going to affect her memory.  Leaving her alone is no longer an option.  My being away for more than an hour sends her into a tailspin.

Each step of the process is weeks and months of waiting to get a consultation, then more waiting for testing.  Referrals to other doctors, and the wait starts with that doctor.  We started early knowing in February she was going to move from NJ to us in NY.  So your conversation may start prior to a diagnosis.  What we have learned, it’s important to approach the conversation with empathy, patience, and simplicity. Here are some tips we got that may help you if you find yourself trying to explain dementia to a loved one:

Choose the right time, setting and words

Find a quiet and comfortable space where you can have an uninterrupted conversation. Choose a time when the patient is most alert and less likely to be agitated or distracted.  Mornings we found were best, especially right after breakfast.   She spirals downward from around 3pm until bed around 9:30pm.

Use simple language.  Avoid using complex medical terms or jargon. Explain the disease in clear, concise, and age-appropriate language. Use familiar examples or analogies to help them understand.

Be patient and supportive, Alzheimer’s disease affects each person differently, so be prepared for varying levels of comprehension and emotional responses. Listen actively, provide reassurance, and respond with empathy and understanding.

We have discovered that words coming from me rather than her son are reassuring.  A lot of this we have discovered is she has only known me as an adult.  So as a result she sees me as an adult where her natural inclination is to look at her son as someone she takes care of.

Focus on emotions rather than facts:

Dementia can be overwhelming, so prioritize the emotional aspect of the conversation. Talk about changes they might have noticed in their memory, emphasize that the disease is not their fault, and reassure them that you will support them throughout the journey.

Break down information into small, manageable chunks.  Present information in small increments to avoid overwhelming the patient. Allow time for them to process the information and ask questions. Repeat key points if necessary.

Try and use visual aids.  Incorporate visual aids such as pictures, diagrams, or memory aids like a calendar or whiteboard. Visual cues can help reinforce understanding and assist with memory retention.

Encourage involvement

Involve the patient in the conversation and decision-making process. Encourage them to ask questions, express concerns, and share their thoughts and feelings. This helps them maintain a sense of control and dignity.  We have a weekly worksheet that states what his happening during the week, and places to notate medication and what she has eaten.  We have even added a place to notate who she has spoken with.  This has cut down in the number of times we have to repeat ourselves.

Repeat and reinforce information. Due to memory loss, individuals with dementia may need repetition to remember and understand. Be prepared to repeat explanations and reinforce important points during subsequent conversations.  What I was not prepared for is when I repeated myself and she did remember how angry she would become at the repetition.  Balancing that is a very fine line.

Be prepared for denial or resistance. Some individuals with dementia may deny or resist accepting their diagnosis. Be patient and compassionate, and give them time to process the information. Offer ongoing support and encourage open communication.  In our situation, everything out of her mouth is passive aggressive and inflicts a lot of pain.  We have learned to not feel guilty and not accept such behavior.  First time we pushed back on it we were terrified.  Now it happens less often, so boundaries are very important.

Seek professional guidance

Consider involving healthcare professionals, such as doctors, nurses, or counselors, who specialize in dementia care. They can provide additional information, resources, and support to both the patient and the caregiver.  Be prepared that the resources are seriously lacking and takes a significant amount of time to coordinate.  Including a lot of dead ends and solutions that will not work for your situation.

If the person do not have a power of attorney and medical directive filled out, this is the time to work with an attorney to get these documents signed.  This will make it a lot easier on you, the care giver, to make medical appointments, and direction on how to proceed going forward.

Remember, everyone’s experience with dementia is unique, so adjust your approach based on the individual’s needs and abilities. Providing ongoing support, empathy, and understanding will go a long way in helping both the patient and the caregiver navigate this challenging disease.