There are many stages and phases of Dementia symptoms. We've learned so far in this series that Dementia affects every person differently. So, when do informal caregivers know when it's the right time to start looking for memory care specific community vs. independent/senior care communities for their loved ones with dementia symptoms, personality changes and behaviors? The answer is yesterday. The truth is that at least a couple months before they actually started looking. It's common for families to struggle and to try to keep something going that hasn't really been working for at least the past month or so before they finally admit they just can't handle all this anymore and they don't know what to do now.
Susie's husband Richard is only in his late 60's but has been experiencing different signs of forgetfulness lately along with changes to his normal personality and behaviors. Richard has always been very active, busy and social. Susie has noticed lately he is misplacing his phone by putting it in the refrigerator or stove, forgetting words, and getting easily emotional. At first she noticed his forgetfulness about a 1 year ago worsening but it has since then progressed even further. She is concerned about him having Alzheimer's or Dementia. She now manages his medications and has noticed him having trouble wetting the bed, so he wears a depends at night. He no longer drives as of a few months ago because he was getting lost and forgetting how to get to the grocery store. She is wondering, will this get better, stay the same or get worse? She doesn't know if she can be his full-time caregiver. She is scheduled to have hip surgery in a month and doesn't know how she is going to care for himself and herself. Susie realizes he is her husband and can handle it now, but doesn't know how she could handle it after her surgery and if he continues to need more help. Does this sound familiar to you at all?
So, to answer Susie's question about how do I plan to help care for Richard when I am getting hip surgery - she needs to find help and to understand what care options are near her. Usually, clients mention, "Well he/she is doing better this week, maybe we can hold off on looking for a community? I strongly disagree, because this lucidity is only temporary. Most families go back and forth without committing fully on moving their loved one to a community because of being in denial about the seriousness of the care needs, not fully understanding dementia and/or think they can handle caring for their loved one on their own no problem. Most of the time, these tactics only work for a brief time until they realizing they need to find help from an expert.
So... what are the most common stages of Dementia?
It's critical to grasp that ALL Dementias are progressive. Unfortunately, Dementia means at least 2 parts of the person's brain are actively dying. Remember these stages are not going to be exactly the same for every person - but this is a good example of what you could see in the different stages of dementia progression.
1. Early stage (common behavior/personality examples):
Difficulty holding onto new content. But, old memories they are able to hold on to pretty strong.
More extreme in their likes and dislikes.
Time sensitive or getting lost or turned around. Example: very common for someone in this stage to say where are you going? why are you going? you've been gone for so long - and you to respond with I've only been gone for maybe 5-10 minutes. So, time sense or sometimes early-on set can be sometimes getting lost or turned around.
Either very territorial or not wanting someone to do something for them.
Trouble managing money, routine of day, medications etc.
Sometimes (50% of the time) people realize things are changing.
Nothing completely terrible yet - but noticeable changes.
2. Middle stage (common behavior examples):
This isn't my house. Why do you have me here? Getting lost in time and place.
Can't change my clothes when I should change my clothes
Can't bathe myself like I used to, having trouble, and not doing it when I should
When are we going to eat? You already ate.
Where's the bathroom? It's upstairs - we don't have an upstairs.
Monitoring everyday and sometimes into the night with some dementias.
3. Later Stage/Sensation Stage (common behavior examples):
I don't like what's happening. I can put toothpaste on tooth brush or hair brush and I don't know whats going to happen next so I can't help you with what I'm going to do next.
Either I can't be settled or I sleep all the time.
I might not be able to talk at all anymore or make sense when I try to speak.
4. Final stage (common behavior examples):
I know familiar from unfamiliar people. I recognize your face but don't know how. I only can stay with you for a short amount of time before I get extremely weak and need rest.
My brains not working enough to stay alive much longer.
I can't chew, swallow well enough to eat safely.
I consistently am losing a lot of weight and no motivation to eat.
Why look for a memory care community instead of an assisted living community?
You should be looking for someone to HELP you who is an expert in understanding care housing for seniors. The options for care with someone with Dementia are overwhelming and there are so many different choices. But, when you are looking for options remember to look for who your mom is now and what her needs are currently with dementia, not who she was 10 years ago before her dementia symptoms/behaviors. It's extremely natural to want your parent to be that person she was 10 years ago - so when you are looking, it's so important to have an expert with you to ask you the tough questions and to really grab a hold of who your loved one is now and what she truly needs now for care help and quality of life.
In Independent living, he/she are really going to need to be able to find their way around and be mostly independent. And in Assisted Living a lot of times people are fairly still capable of doing some ADL's for themselves. Remember - even if a memory care says they provide "memory care," memory care's are not all the same and might not follow through on what they say they provide once your loved one is moved in!
Ask Yourself these Questions when deciding on Memory Care or Assisted Living for your Loved One with Dementia Symptoms
It's so important to have someone guide you to the right care option for you! Having someone know where to look and how to look is incredibly important. **It is crucial who is running the programs at the community that you are looking at - to see if the programs are regularly available and separate from the memory care. Important questions to ask yourself when choosing between assisted living style living or memory care living for your loved one. The community you choose needs to be questioned. It's important your loved one is getting the best care they deserve at the community you choose.
What type of dementia does the residents at your memory community care for right now? They should be able to tell you a few different types of dementia symptoms, behaviors and how their memory care programming and clinical team work together to solve the behaviors and dementia symptoms of their current residents.
What solutions and activities does their team put in place to relieve these negative emotions/behaviors?
Are you a caregiver? How are you doing? Ask yourself these questions... What things are going well right now? What's good? What's bad? What's most important for you as a caregiver is to continue a relationship of love with your loved one with Dementia or Alzheimer's symptoms. Please call me for guidance on community options and if you should be looking for assisted living or memory care.
Laura Cassell, CDP
Gerontologist and Dementia Practitioner
Pearl Care Solutions & Senior Care Authority-Gulf Coast