THIS SET OF ARTICLES is about the progressive condition dementia, common with a number of our clients. Because it is often age-related, the chances of it showing up increases every day. The more we know about the signs and effects of dementia the better we can care for our clients and make sure other healthcare providers are kept informed about their condition.
This first part in the series will be an introduction to what dementia is, and then discussing the three different stages of dementia in future newsletters.
We’ll be discussing the signs of each stage and the behaviors you should be making a mental note of. When they start happening on a regular basis, and it hasn’t been noted before, it is important to bring them up. A note should be made in the logbook, a call into the office, and a mention to the family or healthcare provider.
We’ll also discuss different techniques for dealing with these new behaviors and provide tips that have worked for other caregivers. And if you have tips for the rest of us, please share them!
Senile dementia is defined as the set of symptoms caused by changes in a person’s aging brain. In November 2000, the National Institute on Aging (USA) estimated that up to 50% of Americans aged 85 years or more may have Alzheimer’s Disease, which is responsible for 60-70% of dementia occurrences. Another 20-30% is caused by vascular diseases “multi-infarct dementia” or “mini-strokes.” As people live longer, dementia is becoming an even larger health problem.
Unless a person has been diagnosed as having Alzheimer’s or the other diseases listed below, we should simply refer to their condition as dementia. Other dementia diseases you may have heard of include Lewy Bodies, Parkinson’s Disease, Vascular Dementia, and Frontotemporal Dementia. Dementia can also be caused by certain vitamin deficiencies and other medical conditions.
There can be minor differences in the symptoms brought about by the different diseases, but for the most part, dementia symptoms fall into three categories:
• Recent memory loss
• Language difficulty
• Lack of judgment
Lumping together the symptoms into those three categories is simplistic, but we’ll go into how they show up in the different stages of dementia.
There’s a saying, “When you’ve met one person with Alzheimer’s Disease, you’ve met one person with Alzheimer’s Disease.” In other words, every case will be different and you can’t expect the same reaction between two people having similar symptoms. Caring for someone with dementia calls for patience, alertness, creativity, and above all, a caring heart.
The three primary stages of dementia
Mild: The early stages may be hard to detect but just remember that because of the advancing age of most of our clients, symptoms can start showing up at any time. Be understanding and patient and above all, don’t berate the person. Start noting the symptoms. It is especially important to bring up to healthcare providers since people best respond to certain kinds of medication at this time, rather than later.
Moderate: As symptoms worsen, care needs increase when the person suffers further detachment from reality. Their brain isn’t what it used to be and it is our job to help them cope in their daily lives. This stage can be a time of intense frustration as they feel their reality slipping away and they may lash out in combative ways towards those closest to them. Because of the increased challenges, it is important for caregivers to get the care *they* need during this stage.
Severe: Requiring the most care, often aided by heavy medication and possible transfer to an advanced-care facility designed just for this difficult stage.
When signs of dementia start showing up, it is important to contact the person’s doctor who can accurately diagnose the condition and take appropriate steps. The physician might request a diagnostic workup, including a complete physicial and neurological exam. This can help determine the stage and cause of any dementia present. The tests can also rule out other causes of memory loss like head trauma, infection or vitamin deficiency.
Early diagnosis is important so that drugs approved for dementia have the most beneficial impact. Slowing down the changes of the brain can mean a higher quality of life for a longer time.
It’s important to remember that we all have occasional lapses in memory, but it becomes problematic when it starts happening on a regular basis and affecting a person’s quality of life.
Warning signs of Mild Dementia
Changes in memory and other thinking skills are the most reliable way to track the different dementia stages. What happens is, recent (short-term) memories are normally stored in our brain long enough to become long-term memories, but with dementia, there’s a short circuit that causes a short-term memory to be deleted. Over time, these episodes will occur more frequently.
During the Early-Mild stage, a person might forget appointments or other important meetings and may start leaving more notes for themselves as reminders. They may forget to take medications or double up on dosages.
In the Mid-Mild stage, memory lapses increase. They may write notes to themselves, but forget writing them. They begin to say less in phone conversations. They start to get lost, even on familiar routes. They often forget to take medications. They may start to forget to bathe and take care of simple grooming tasks. They repeat questions or stories more often. They may become depressed when they feel life as they once knew it slipping away from them…something “doesn’t feel right.” At this stage, the person may still be wanting to drive, but because of the need to manage the various and changing environmental conditions, driving with dementia presents an obvious threat to themselves and others.
In the Late-Mild stage, speech problems may start showing up as they forget common words and start making them up. Instead of calling a pen by its name, they may call it a “thingamajig” or a “pencil stick,” or referring to a broom as “that thing for sweeping.” They continually forget important appointments and frequently repeat questions and stories. They may also start getting moodier than normal and blame others for their own mistakes.
What caregivers can do for Mild Dementia
It’s important for caregivers to communicate behavior changes to the person’s doctor, and to keep an open dialog with healthcare providers.
Be empathetic of what the person is going through. Begin to accept that their brain is changing and most likely will not be the same again. It is our job to help them through this sometimes difficult process.
Helping them means doing for them those things they once could do themselves. Keeping track of and driving them to appointments. Cooking and housekeeping for them. Handling medications and financial needs. Working with the family to make sure they’re not driving. Above all, try to be patient and not berate them for something out of their control. When emotions escalate, count to ten or remove yourself from the room. And have someone to talk to. It’s not easy.
As in the Mild stage of dementia, the Moderate stage can be further broken down into Early-Moderate, Mid-Moderate and Late-Moderate. Active involvement in the person’s everyday life is more important during this stage, from communication with the healthcare providers to assistance with their Activities of Daily Living (ADLs). It may be a good idea to suggest the services of a Geriatric Care Manager or social worker in order to plan for the person’s future.
Signs of Moderate Dementia
In the Early-Moderate stage, the person has more difficulty with short-term memory. They may be able to talk about the past, but not recent events. Even if it’s an important event, they may not remember it, with the possible exception if there’s an emotional attachment to it – they may remember a happy holiday gathering for days afterward. The person may need help choosing what to wear or selecting from a menu. They have problems counting money. They may repeat simple behaviors over and over. If they’re still driving at this stage, they will probably start having accidents, if they haven’t already. They may start to “wander,” leaving the house and forgetting how to get back.
In the Mid-Moderate stage of dementia, they may start focusing on childhood memories more than the present. They are more likely than not to forget about medication. They may forget who just visited them, even commenting, “they never visit” about someone who just did. They may ask, “Where are we?” or “What should I be doing?” They may not recognize their house. They may not be able to tell the difference between public and private behavior (disinhibition). Paranoia may exhibit itself and they start worrying about finances to the point of taking cash out of their bank accounts without telling others. They may forget to eat and they may start soiling themselves.
In the Late-Moderate stage, they sometimes can’t identify friends or grandchildren. They may confuse distant memories with recent, thinking they should be at work or school. They tend to worry about unfinished business more, worrying that their young children are safe, or blaming a long-passed spouse for infidelity. They may lash out at those caring for them. Disinhibition may become more of a problem with sexually-charged situations. Sleep will likely be restless with frequent nightmares.
What caregivers can do for Moderate Dementia
Once dementia has been diagnosed, it would be prudent to also consult with an attorney to discuss Power of Attorney (if the person isn’t married) and different health directives that carry out the wishes of the person.
At this stage, it is more important to seek outside help because it will probably become too much for one person to handle. In some ways, it is more difficult than caring for a child 24/7. Seek out agencies with adult daycare programs that have fun activities and can give family caregivers a break. Inform friends and neighbors of the situation so they can be on guard should the person leave the house by themselves.
Moderate dementia calls for help with all ADLs: personal hygiene/grooming, dressing/undressing, feeding, transfers/ambulation and toileting.
Steps should be undertaken to protect physical safety: grab bars installed in the bathroom, door alarms installed to keep from wandering, knobs removed from the stove, knives and other sharp instruments locked away.
Emotionally-charged situations call for a certain amount of creativity. Try distraction, stepping back or just playing along. Avoid asking questions which may frustate them. Identify yourself and others when greeting them to give them a hint to who you are. Remember that trying to reason with the person won’t have the same impact that it may have once had.
As in the Mild and Moderate stages of dementia, the Severe stage can be further broken down into Early-Severe, Mid-Severe and Late-Severe. During this most difficult stage it is important to realize that more advanced care is needed to help the person achieve the best quality of life possible.
Signs of Severe Dementia
In the Early-Severe stage, the person will have extreme difficulty with short-term memory. They will most likely have difficulty describing past events, with facts becoming confused and scrambled. They may start forgetting faces of those closest to them, like children and spouses, possibly asking, “Who are you?” They may have violent episodes attacking others.
In the Mid-Severe stage of dementia, they will most likely need help with urinary and fecal incontinence. Language continues to degrade to the point of nonsensical utterances. Because of the loss of most memory, difficulty communicating and loss of self-awareness, the only reality the person may know is the present.
In the Late-Severe stage, they may not communicate at all with words, but only with utterances and slow gestures. Generalized rigidity is common. With the loss of physical motor skills, they are most likely bed-bound, and completely urinary and fecal incontinent. Their eyes may be vacant stares.
What caregivers can do for Severe Dementia
It will take concious effort to change your behavior around the person with severe dementia. Rationalization won’t help and you should continually seek out tips for creating comfort for the person.
Living in the present in this stage also applies to the safety of the person. Performing a Home Safety Check (WeCare provides this free of charge) can point out problem areas like kitchens and bathrooms. Because of decreased mobility, trip hazards become an increasing problem. Make sure that hot water temperature is at a safe level, 120 degrees, hot enough to destroy bacteria, but not too hot to scald a person if the bath water is left running.
Hygiene is important as the person becomes more neglectful. With incontinence, a watchful eye (and nose) is important to keep the body and linens clean. Use gloves and dispose of them properly. A tightly sealed hamper and frequent laundry may become necessary.
Be careful for your own safety, as well. The person with late-moderate or severe dementia may become combative without warning or provocation, using objects as weapons or grabbing and biting. Keep knives and other sharp objects out of reach and keep an eye on anything that can be picked up and thrown. A cane is often a ready object to strike others. Be alert when in close quarters with the person where they may grab hair or bite an arm. If a violent episode occurs, don’t try to restrain them or reason with them, rather back away to defuse the situation, letting them calm down by themselves when they see that you don’t pose a threat.
Focus on creating emotional comfort by treating the person with dignity, affection, and security. That will have the most impact to help influence their mood and behavior.
More on care for persons with dementia
Because of the intensity of care that may be required, it is often difficult for one family member to provide it 24/7. If friends or family wish to provide these services it is important for them to be aware not only of the demented person’s needs, but also of their own needs. It is not uncommon for a spouse or children to feel that they have an impossible choice between being overwhelmed (trying to provide all the care), or feeling they are betraying their relative (by sending them to a nursing home). This often leads to the care provider becoming exhausted. Because of this it would be helpful to investigate local resources to help the care provider.
Ask the person’s doctor or contact the senior services department of the local hospital what resources are available for respite care, adult daycare centers, adult foster care, Meals on Wheels, or a local Geriatric Care Manager. The best care for dementia requires teamwork.