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Alzheimer’s caregiving – what we really need to know about “Stages”

Karen Francis writes about the stages of Alzheimer's

The Stages of Alzheimer's (and other dementias).....I am constantly asked in support groups and classes, "How do I know what stage my loved one is in with this disease?" Here is my answer....

I have not only cared for my own family members with AD and other forms of dementia but I have also been running support groups for families, individuals with a diagnosis and have been assessing people for many years for appropriate care.

HERE is what you need to know.....each stage is just a set of symptoms.

You need to journal on a daily or regular basis changes that you see, good days (and what they were doing that day) and bad days (why was it bad, what triggers were there, i.e.-other illness, fever, UTI, too much stimulation, lonely, change in medications, change in sleep pattern). So....by keeping track of symptoms you can make sure they are getting the appropriate care and treatment.

Understanding what the appropriate care and treatment are for that person is much more important than having someone tell you that they are in stage 3, 5, 7.....this isn't a disease like cancer that can be easily staged since we don’t have the precise technology (there are improved technologies, but something like the PET scan with the F18 injection are not covered by insurance or Medicare).

The best we can do is learn about the typical progression so that we know what could happen and prepare for that. We know with Alzheimer’s disease that a person will forget things, so we can help them to remember by giving them cues and taking over some of their responsibilities.

We know that their behavior may change for the good or worse- if it changes for the worse, we can learn how to redirect them to something pleasant, give them things to do that make them happy, or lastly, medication for anxiety.

We know that their judgment will be impaired which could lead to a wandering incident or accident in the home so we need to give them more supervision, put things in place to make the house more safe (less throw rugs to trip over, label doors - bathroom, bedroom, etc.).

If they are talking about leaving the home and shouldn’t, we can add locks, disguise the door with curtains, etc.

We know that they may become incontinent- we can help them by taking them to the bathroom on a regular schedule to postpone the need for incontinent supplies. When they do become incontinent, we need incontinent briefs, barrier cream, a commode to keep near the bed.

We know that they are going to have problems with depth perception; we can keep their home less cluttered, less patterns in their surroundings, label things they need to use.

We know that they are going to have problems with balance, walking and falls, -we can install handrails, get them a cane, a walker, eventually a wheelchair if needed.

We know that they may have problems getting in and out of bed, we can get a hospital bed if necessary, and we can get a scoop mattress if you worry about them falling out of bed.

We know that in the end, they may have problems with swallowing (listen for little coughs, watch for drooling, pocketing of food in their mouth) - we can have a doctor and speech therapist do a swallow study to find out if they still have the swallow reflex and if they don’t, we can start a different diet and add things to their food and drink that make it easier to swallow.

The bottom line is that you know what they need, not so much the stage. Everyone is different. This disease can last for over 20 years; there is no precise time limit for anyone, no precise time limit for each stage. Know the symptoms and go from there.

Before a situation becomes unsafe, plan. Look into options for additional help in the home, get them to the right kind of doctor, and look at other care options - home care, adult day program, assisted living, memory care unit, nursing home.

Learn about Palliative care and hospice. Palliative care and hospice services area blessing and doesn’t mean death is imminent...it means that the extra help you get from that company is covered by Medicare. You have a medical professional visiting them to let you know how they think they are doing, you have extra sets of hands to help with bathing, feeding, you have emotional and spiritual support.

I can break down the stages of Alzheimer's, but I feel like we are giving them another bit of doom by saying "you are no longer stage 2, you are stage 5". We just need to educate ourselves, watch for changes and respond appropriately by putting what they need in place so there isn't more stress added, because face it, we all have enough of that. Relax about the stages of Alzheimer's  and just love them.

Karen Francis

More articles by Karen Frances in our Caregiving advice section.

stages of alzheimer's