Frequently Asked Questions
Click the plus symbol for each question below to read the answers to questions we’ve had over the years.
General Alzheimers Questions
What are the stages of Alzheimer Dementia (AD), duration of the stages and what behaviors are typical at each stage?
7 Clinical Stages of Alzheimer’s is a website that gives a very good explanation concerning the stages and expected duration of AD.
How do you eliminate arguing with people who are adamant about what they want?
- They are arguing with emotions, you are arguing with facts/logic…the two don’t match.
- Going to the bank example… get it all ready for Monday, banks closed today
- Wanting to drive .. car is broken until next week (disconnect the battery!)
- Wanting to ‘go home’ or ‘call parents’ – they’re asleep, said too late to drive tonight in weather
Family Questions
Does Susie remember you and the kids and friends?
Our experience has been that the emotional brain compensates for cognitive decline. Sue may not remember a person’s name, but recognizes the family, caregivers and friends that provide the support and love she, and everyone, requires as a person.
From writing in; Dementia Reconsidered, Revisited – The Person Still Comes First” Tom Kitwood and edited by Dawn Brooker (Kitwood)
People with dementia can, in fact, learn new things, make new friends, and make new long-term memories of those who treat them kindly as well as those who treat them badly. Their actions will often mirror how they have been treated.
What is the key to ‘successful’ caregiving?
Emotional memory and trust do not diminish with cognitive decline. In fact, they can increase as a need, and flourish with kind, gentle caregiving. Emotional memories can be formed – either positive or negative – during all phases of the disease. A trusting relationship between caregiver(s) and the person being cared for is established, often over decades. That emotional trust is not part of the person’s cognitive ability to remember, and is a sustaining piece of the caregiving process throughout the disease progression.
Caregiver Questions
Has Susie become aggressive and/or very anxious toward those caring for her?
If a negative behavior expresses itself, which it will – try to identify & address the root cause of the behavior. As expressed by Kitwood:
Problem behaviors – old culture: when a person shows problem behaviors, these must be managed skillfully and efficiently. New culture: all so-called problem behaviors should be viewed, primarily, as attempts to communicate related to a need. It is necessary to seek to understand the message and so to engage with the need that is not being met.
It takes a real effort not to allow problem behaviors to raise the anxiety levels of all involved. This could be from constant wanting to leave (checking doors) to not wanting to get dressed, to not wanting to shower or use the restroom. Try to be there with non-anxious presences- just observe before reacting and work with your professional team to develop diverting techniques.
Develop a sense of what is really important for the comfort of the loved one even though it might not be the routine you want to have happen. – Everyone has value and everyone needs to be heard. (credit to — Scott Veatch, Wyoming Dementia Together) The loved one is a PERSON who is living with dementia. The behaviors are the disease manifesting themselves not their intention to be difficult.
Where am I? What are some of the causes of wandering and how to deal with them?
From the book – From Here to There —
In the beginning we are lost as it’s possible to be – and there is no map – eventually we strike out and become sophisticated exploiters, but in the latter stages of our lives this can slip from us once again, leaving us back where we started, as misplaced and map-less as newborns.
Lostness is an inevitable consequence of Alzheimer’s disease, the virulent form of dementia, causes neurons throughout the brain to wither and fade. The disease particularly affects the brains’ spatial areas, that are essential to navigation – active in decision-making and learning routes.
Alzheimer’s is commonly understood to be a disease of memory – perhaps, more fundamentally, it is a disease of orientation, a slow severing of ties of one’s surroundings. Spatial lapses are among the very first symptoms – misplacing keys, getting confused on regular routes etc.
The tragedy for Alzheimer patients is that the compass they have always had is now fading, and their map is shrinking. Disorientation becomes their default state, leaving them lost in places they have always known. Despite this, many of them choose to walk rather than stay where they are.
Wandering has long been seen as part of the pathology of dementia. Doctors, carers and relatives often try to stop patients venturing out alone, out of concern that they will injure themselves or won’t remember the way back. As the disease progresses the loved one should always be accompanied on all walks outside the home. however, let them have the freedom of wandering and leading the direction etc. Wandering may not be as much a part of the disease as a therapeutic response to it.
Perhaps the desire to walk, even though under severe disorientation, should be seen as ‘an intention (211) to be alive and to grow, rather than as a product of the disease.
The movements of Alzheimer’s patients might look aimless, but they are likely full of purpose. When you don’t completely understand the world, it makes sense to search it out, to look for what you haven’t found
Why a person wants to walk they may be wanting to continue the habit of a lifetime’ they may be bored, restless or agitated; they may be searching for a place or person from their past that they believe to be close by or maybe they started with a goal in mind, forgot about it and just keep going. It is also possible that they are waking to stay alive.
Allow your loved one to walk around the home freely – ok to check the doors and explore the environment. Outside the home, be present with your loved one – but allow them to just wander and explore. This is also true when walking at parks or around the neighborhood. Great exercise for both of you and will help relieve anxiety.
If moving to a Care facility is necessary, it will be a traumatic experience; moving from an environment one knows well to an unfamiliar place. Those orientation problems just add to the anxiety a person feels after moving out of a home you’ve lived in for four, five or six decades. So the care partner should, if at all possible, spend the time often wandering with your loved one around the facility and just explore -allowing them to lead.