Common Caregiving Challenges in Alzheimer’s & Dementia
Unlike many illnesses where only the patient feels the symptoms, the symptoms of Alzheimer’s disease affect both the patient and those who interact with them. As Alzheimer’s alters the ability of the patient to think and function, those changes can impact others. Listed below are some common challenges you may face and the strategies we’ve found that can help.
Common to Early-Stage Illness
If your loved one asks the same question over and over, keep in mind that while you can remember the question and answer, your loved one cannot make new memories, so they truly may not be able to remember. Avoid arguing or angry responses; avoid degrading the person for not remembering your answer.
Strategy: “Respond or Redirect”:
Respond clearly, slowly, and concretely to questions …as many times as you can!
Redirect into another activity. Choose anything but make it something you know they like or will keep their attention.
You can try having your loved one repeat the answer, write down in a notebook they carry, check the calendar, etc. But realize some loved ones will simply NOT be able to make a new memory to remember and so they will also forget they wrote it down in the book.
If your loved one repeats the same story over and over, keep in mind: Your loved one is losing memories and likely cannot remember that they have told the story already. Avoid stating that it has been shared before and above all avoid teasing or shaming them for repeating.
Strategy: “Enjoy or Redirect”
If it’s a story they enjoy and it’s a good time for a story, just enjoy it! If it’s not a good time, the wrong audience, or other reason it’s not a good time then redirect….
Take a cue from this! Since they enjoy talking about the past, set aside time to reminisce with them.
Redirect into another activity. Choose anything but make it something you know they like or will keep their attention.
You can TRY helping your loved one choose different stories to tell at appropriate times and places.
If your Loved one’s personality seems to have changed, keep in mind: It probably has changed. We think of Alzheimer’s disease as a memory loss disease, but it can and does impact the emotional and personality centers of the brain. Do what you can to keep in mind this is an illness creating symptoms and NOT your loved one choosing to feel and behave in upsetting ways.
Strategy: “Recognize and Respect”
Understand personality and change and any new/uncharacteristic moods or behaviors as part of the disease
Some caregivers characterize the unexpected moods and behaviors as coming from “Mr/Ms. Alzheimer’s” to distinguish it from the Loved One’s true nature.
Promote quality of life and social engagement for your loved one while keeping in mind they may not be as engaged in social activities as they had been (known as Apathy Syndrome), or there may be a “mean streak” you’ve never seen before.
If you know these tendencies are now present, adjust their activities or quietly discuss with friends or family ahead of time to reduce the chance for conflict.
If your loved one leaves tasks uncompleted or does not do what they say they will do, keep in mind: In addition to memory loss your loved one is likely to have difficulty keeping track of time, multi-tasking, and/or staying organized. Failure to complete the task or keep a promise is most likely not intentional but caused by the memory loss of Alzheimer’s disease.
Strategy: “Support and Structure”
Create a daily routine and help your Loved One maintain it
Help their fading memory with reminders in all areas: bathroom, kitchen, bedroom
Request help with tasks around the house or errands at the time you need it. This is an illness where as a caregiver, you need to plan ahead for your busy days, but your loved one may not need as much time to prepare. In fact, that extra time may cause increased confusion for your loved one since time awareness is impacted.
Provide step by step assistance for complicated tasks
Provide verbal assistance if the person is having difficulties completing the task.
Later in the illness it may be necessary for you to provide physical help with the task but start with gentle verbal cues as support.
If your Loved One’s Abilities seem to change from day to day or even hour to hour, keep in mind: This can happen. For some patients there can be periods of the day when they feel sharper and other periods where they feel fuzzy. Many times, the morning is a good time and late afternoon/evening is not.
There is a term, “sundowning,” that refers to increased confusion due to the waning hours of sunlight in the late afternoon. For some patients the illness itself has this pattern, for others it relates to one or more factors such as sleep disturbances, medications that impact the brain, and other medical conditions. As a family caregiver you have a unique ability to observe how this collection of factors impacts your loved one and make necessary adjustments to their care.
Strategy: “Have a Plan for the Day that Matches Ability”
Think about these questions:
Does your loved one have a “good time of day”?
Spend a few days watching your loved one and take notes. See if you can observe the kinds of information that is recalled easily.
Determine if presenting information in written or auditory form improves memory
Realize most everyone will remember more when relaxed and not under pressure or in an exciting and active environment
If your loved one denies memory problems, makes excuses, blames others, and/or seems unaware there is a problem, keep in mind: Due to the impact of the illness, it is entirely possible your loved one will not recognize they are having more difficulty than they should. In that case, they may make excuses or blame others for lapses. It may appear they are “in denial,” but often, the illness has taken away their ability to recognize it.
Strategy: “Support and Empathy”
Avoid forcing the person to face the memory loss
There is nothing to be gained by having a patient “truly understand” the illness unless there are safety implications. Allowing or facilitating the “denial” for the Loved One can sometimes be the most compassionate form of support.
Gently provide reminders or other support to aid facts, events, or activities your Loved One is not remembering.
Avoid pointing out the memory lapse; rather just complete the activity, and listen to your Loved One’s concerns.
Common to Mild-Stage Illness
If your loved one insists they do not need help and becomes angry when you offer to help, keep in mind: Due to the impact of the illness, it is entirely possible your loved one will not recognize they are having more difficulty than they should. If they don’t see a need, why would they accept an offer of help? And yet, you know, they do need help. That’s frustrating for both of you. But YOU are the one who needs to keep the situation from escalating into an argument or leaving both of you with hurt feelings.
Strategy: “Surveillance Caregiving”
Quietly, without discussion, and if need be, from afar, observe your loved one completing the usual day to day tasks they typically do for themselves. If you then see something that really does need your help, THINK TO YOURSELF, and determine what help is needed and how you can provide it in as invisible a manner as possible.
Seek and identify more acceptable strategies for allowing their “independence”. If they have forgotten an evening dose of a medication, for example, then starting to use an AM and PM medication organizer for yourself AND getting one for your loved one may work. No big discussion why is needed (since it would be hard for your loved one to understand fully) or say it’s to help YOU keep track better.
Avoid confrontation unless there is a safety concern e.g., driving or a potential serious consequence is a risk e.g., financial management
If your Loved One is a SPOUSE and becomes more sexually demanding or displays embarrassing behaviors, keep in mind:
The changes of the brain can include the frontal lobe that is home to our social filters that typically tell us what is appropriate or not in a public setting.
The frontal lobes are also where our emotional control centers are and where we develop the ability to control urges, including sex drive.
Your loved one may have decreased inhibitions and control leading to these difficult behaviors.
Strategy: “Support”
Rely upon touching and caressing for needed contact
Discuss with a physician or counselor if persistent
If your Loved One: Behaves inappropriately in public, such as making up stories, saying unusual things, being “too friendly” with strangers, or displaying embarrassing behaviors, keep in Mind:
The changes of the brain can include the frontal lobe that is home to our social filters that typically tell us what is appropriate or not in a public setting.
The frontal lobes are also where our emotional control centers are and where we develop the ability to control or monitor what is right or wrong in a social setting.
Your loved one may have decreased inhibitions and control leading to these difficult behaviors. For example: Some people with Alzheimer’s disease become less aware that it is nowadays considered very inappropriate for an adult to talk to a child that is not a relative. Imagine you are walking through the grocery store and your loved one approaches a young child and smiles and starts talking to the child. All innocent of course, but not socially acceptable today in most communities.
Strategy: “Be Prepared”
Be prepared to gently refocus your loved one on another topic and slowly move away from the other family.
Have a supply of Please be Patient cards. These discreet cards explain your loved one’s illness and its impacts. Most of the time the strangers involved will have a high level of compassion and move on quietly.
Should there be a more major confrontation or commotion created by these behaviors the cards can be provided to authorities or law enforcement to help clarify and diffuse the situation.
If your loved one accuses your family and friends of making up stories about them or you, keep in mind: This is a common symptom of Alzheimer’s disease and is directly related to changes in memory and judgement.
Strategy: “Support and Side-Step”
It is usually best to avoid trying to “get your loved one to understand,” or “help them remember the truth.” Confrontation generally will be met with anger and increased confusion. Due to the memory changes, it is often not possible for your Loved One to clear up this mistaken set of facts.
Rather try to work with them to address the underlying concern the story brings up. For example, if they think a family member skipped a birthday dinner to go to a football game, acknowledge how that made your loved one feel and then move on to a more positive topic. Often this “side-step” will help your loved one move away from the upsetting issue.
The key steps are:
Avoid contradicting the person directly, listen to their concerns
Avoid highlighting mistakes
Give calm and reasonable explanations in terms your Loved One can understand
Try to address the key issue
If an item is lost, whether you know if it is truly lost or not does not matter. Address the worry your loved one has of a lost item and offer to help find it. Then quickly move to another topic that you know will be more positive. (Review the THINK FAST handout.)
If your Loved one accuses you or others of stealing or mishandling money or stealing other possessions, keep in mind: This is a common symptom of Alzheimer’s disease and is directly related to changes in memory and judgement.
Strategy: “Support and Verify”
Though this accusation is most likely a result of your loved one’s memory lapses or other cognitive changes, there are times when someone with Alzheimer’s disease is taken advantage of. It is probably best to validate that the accusation is not true. Do this with as much care as possible so as not to embarrass your loved one or anyone involved. Typically, of course, innocent people will be understanding of the impact of the illness on your loved one and will cooperate fully.
Following that, it is best to try to address the fear this concern raises. In this case the fear is “my money is not safe.” So here are some steps you can take to help address this fear.
Step 1) Reassure your loved one that YOU will make sure no one mishandles/takes their money. This reassurance is KEY and starts to have your loved one trust you and let you manage certain aspects of their care. Personal finances are a particularly sensitive area and a difficult one to allow others to manage.
Step 2) Agree that “someone else taking their money is not good/appropriate”. This validates their CONCERN but doesn’t specifically validate the accusation. (Of course, this is only appropriate after you have determined there is no basis to the accusation.)
Step 3) Verbalize a Plan. Describe how you will investigate the situation. This allows YOU to figure things out without your loved one in the mix.
Step 4) Begin to Transition Financial Management
Assuming the accusation was false, if your Loved One was still managing their own finances, this situation is a clear sign it is time for someone else to manage your loved one’s finances. You or another trusted party needs to assume responsibility for financial matters from here forward.
Discuss finances with a lot of sensitivity as this is a very personal area
Do allow the person to keep some cash on hand to smooth the adjustment to other financial arrangements
Consider legal arrangements early: seek advice regarding power of attorney and or guardianship
Common to Moderate-Stage Illness
If your Loved one continues to drive a car despite incidents or safety concerns being raised by others, keep in mind: There is nothing quite as critical to adult independence in the United States as the ability to drive. Consequently, it has become a marker of self-worth and for many equates with having a quality of life worth living. The loss or threatened loss of the driving privilege is among the greatest fears of many. The feelings often include strong resentment against whoever is contributing to the loss of the license.
Strategy: “In Matters of Safety Stand Strong”
There are some responsibilities of caregiving that simply must be managed with actions that may not be appreciated by your loved one. If you feel your loved one is unfit to drive, is not safe or takes excessive chances, you need to act. If you or others have stopped riding with your loved one, you need to act. There is no such thing as increased safety just because it’s a well-known route or close to home. Accidents often happen near home. Patients with Alzheimer’s disease get lost in familiar locations all the time.
If your loved one will not agree to stop driving, keep in mind that it’s important for them to maintain their dignity, and these strategies may help them to do that.
Strategy: “Dignified Agreement”
Use family support to convince the person to stop driving. Who is the ONE person in the family your loved one always seems to listen to? It may or may not be someone in town or the primary caregiver. This can be a unique role for someone.
Consider donating the car to a needy grandchild in a city out of town.
Enlist the help of a trusted primary care provider or other physician, lawyer, insurance agent, friends of family –anyone who is in a trusted position in the loved one’s mind.
In some states a physician or other licensed professional who becomes aware of your loved one’s issue is required to report that to the state department of motor vehicles. Often this can be a traumatic and upsetting event, but in the end will increase safety for you, your loved one and your community.
Contact your local police department about restrictions on how to remove license
Remove keys, or replace with a car key that will not fit
Consider having the car “break down” and need a fix
