omanfred-original_scaledCaring for a loved one with dementia is one of the biggest challenges that caregivers face. If you are caring for your loved one at home (yours or hers/his) just when you think you have a pattern and schedule down pat, there are new changes that you didn’t anticipate. If you are visiting your loved one in a facility, just when you think everything is calm and stable and you can relax, you get that 2 a.m. call that mom/wife/husband was taken to the ER. One of the hallmarks of caring for someone with dementia is that things will change, sometimes slowly, sometimes quickly but they will change.

“He recognized me yesterday and now he had no idea who I am and thinks I’m out to rob him.”
“She cooks herself breakfast and burns the toast and leaves the burner on.”
“She cannot find the bathroom and she poops in the planter.”
“He left the house and wandered away in the middle of the night.”

On and on. And so much more. This link is very informative about the stages of Alzheimer’s and what to expect with each stage: Seven Stages of Alzheimer’s

Early Stage:
Very early on, there might be no signs at all that something is awry. Often the first inklings are inability to balance a check book, forgetting recent events or outings. Those might be all the indications there are. But often that’s not all: if the person is working, co-workers may notice problems with: word-finding, remembering names or executing the tasks of their job. This also happens in social settings. But it is the executive functioning difficulties: problems balancing the checkbook, suddenly poor record-keeping or problems organizing a small party that indicate a deeper and more lasting problem. 

Mid Stage:
Later on though, after months or maybe years, the deficits become more apparent. Driving becomes difficult both because the loved one gets lost in once-familiar territory, or has accidents (serious or not). He cannot assimilate all the information he’s getting from traffic signals or road conditions and merge it with steering the car or applying the brakes (or gas). He or she may need help in using once familiar objects, especially if it requires many steps or is complex. Even dressing may become a problem with difficulties  in choosing clothes, or buttoning buttons. Food preparation except for the simplest mundane aspects becomes too hard and confusing, with inability to follow recipes: but asking her to snap beans or peel carrots can work. And she might have more trouble doing the crosswords puzzles she once did so well. At this stage both the person and her/his family know there is a problem and often medical help is sought. This middle stage can last a long time and is usually the longest. Deterioration continues with some days being much better than others. My mom was in middle stages for about about 8 -10 years. 

Late Stage:
As the disease progresses to the final stages, the person eventually requires 24/7 care: help with eating, with using the toilet, perhaps even walking. Your loved one will forget that you just went to the Arboretum and may have long ago forgotten your name, though she still  knows hers. During this phase the sleep habits may begin to change and she most definitely requires Depends® even if she is able to sometimes tell you she has to use the loo. The difficult behaviors often happen in the later stages also. Combined with the sleeping issues these behavior issues may force placement in a facility.  By this time communications have deteriorated markedly and your loved one may not understand what you are saying, and will certainly say less and less. But they often will still respond to touch, kisses, hugs and can still benefit from your presence. 

The above is a basic and very short overview of the decline in dementia (Alzheimer’s). Other dementias can behave differently.  Seven Stages of Alzheimer’s, presents a fuller picture with a more nuanced breakdown.

But no matter what stage you loved one is in, there is still a human being there. Social skills can be retained until very late in the disease allowing some and often good communications. The conversations may be difficult (see communications tab) but with some effort and until very late in the disease, they are still possible. And even if not possible, non-verbal and loving interactions can take their place: kisses, hugs, gentle stroking, these are almost always appreciated and treasured.

For more information about dementia check out these resources.