Being a caregiver for a parent who has dementia brings with it a host of new challenges and demands on top of giving care to an aging adult. Your parent’s personality may change in unpredictable and unexpected ways. You have to constantly adjust.
Jump ahead to these sections:
- What are the Characteristics of Dementia?
- 1. Denial of Dementia
- 2. Refusing to Shower or Attend to Hygiene
- 3. Refusing to Go to the Doctor
- 4. Refusing Outside Caregivers
- 5. Refusing to Take Medications
- 6. Angry, Agitated or Rude Behavior
- 7. Refusing to Move to Assisted Living
- Can You Do Anything If Your Parent With Dementia Refuses Help?
Establishing an approach that is grounded in a few principles will help. At the top of this list is to stay as calm as you can. A calm and reassuring attitude will have a positive effect on your parent, who may be just as frustrated as you might be. Imagine what it must feel like to lose your memory and the ability to do the most basic activities of daily living.
Consider using simple instructions that don’t have multiple or complicated steps. Your parent’s brain may not be able to process that much information. If you can, give as much autonomy as possible so that your parent feels they have some control over a life that seems to be slipping away.
What are the Characteristics of Dementia?
Understanding the symptoms of dementia can help you empathize with some of the more difficult behaviors associated with the disease. Some of the common characteristics of dementia are associated with memory loss and confusion, among others. Since most forms of dementia are progressive in nature, behaviors can get worse over time. No one knows the exact causes of dementia, but for a small subset of people, there may be a medical reason.
According to the Alzheimer’s Association, “Dementia is an overall term for diseases and conditions characterized by a decline in memory, language, problem-solving and other thinking skills that affect a person's ability to perform everyday activities. Memory loss is an example. Alzheimer's is the most common cause of dementia.” Reading some books on caregiving can help round out your education about the disease.
- Memory loss.Memory problems may start out slowly, and then over time become so bad that people may not even recognize family members.
- Confusion. People with dementia may forget where they are or why they need to do certain tasks like bathing, or taking medications. They may become very confused in unfamiliar places or with people they don’t know.
- Agitation. Not everyone with dementia experiences agitation, but many do. They become agitated and resistant to being asked to do certain things.
- Organizational challenges. The sequencing of tasks is difficult or impossible. Examples include driving, cooking, dressing, managing finances, and taking medications.
- Wandering and getting lost. In the beginning phases of dementia, someone may start to get lost while driving. Eventually, people may leave their home unattended and wander without knowing where they are going.
Several tried and true techniques can help convince someone with dementia to accept help. This is a process that requires extraordinary patience and flexibility.
Most likely, every strategy will have to be repeated, but with time, you will find out what works best. Our tips will identify common problems and then possible solutions to those problems.
1. Denial of Dementia
This occurs more often at the beginning of the disease and it can be incredibly frustrating. The term “anosognosia” is used to describe the inability of someone to know they have a problem, and they go out of their way to deny it.
Many experts suggest that it is fruitless to try and convince someone they are having problems. It often has the opposite effect of creating anger and agitation.
Here are some tips that may help with denial:
- Address the problem itself rather than judge the person’s behavior. Trying to talk someone into believing they have a problem rarely works.
- Be supportive and offer solutions. For example, if your parent is having trouble paying bills, offer to take over. If they are mismanaging their medications, set up an automated pill dispenser or weekly medication box.
- If you have a hard decision to make regarding safety (like taking the car keys away), do what you have to to keep someone safe, but expect that the decision may be met with disbelief and anger.
2. Refusing to Shower or Attend to Hygiene
Refusing to shower is a common issue, but there are ways to make bathing more appealing. However, it is important to remember that you don’t want to ever force someone to bathe. Assess how often taking a bath or shower is really necessary. If you can reduce the number of times someone bathes, the fewer opportunities for resistance.
- Make the environment appealing. Warm the bathroom in advance of the shower.
- Speak in a calm and reassuring voice.
- Pick a time of day where you are more likely to have success. For people with dementia, this is often in the morning.
- Some people don’t like water on their heads. Consider a bath instead and wash hair separately.
- If someone doesn’t want to get dressed, leave for a while, and come back to try again at a later time. The same with brushing teeth or any other hygiene duties. Break down all tasks into simple steps.
3. Refusing to Go to the Doctor
Some people with dementia may not want to bother with attending a doctor’s appointment or may insist that it is not necessary. The tips below can help you address the concern and figure out what may be driving the refusal.
- Is the issue urgent? If it isn’t, pick your battles and consider using telehealth instead for a routine appointment.
- Try and find out what the fear or concern is. Perhaps your parent doesn’t like the doctor or is afraid of needles. Be reassuring, and avoid using a condescending tone.
- If there is an urgent need, you may have to push more forcefully for a visit. Do so with confidence but kindness.
4. Refusing Outside Caregivers
For any busy caregiver, hiring outside professional caregivers often becomes a much-needed option. The trick is to convince your parent to accept a stranger and one that may be taking care of intimate personal needs.
- Work with an agency to find a good match for your parent. Trial and error might be part of the process.
- Start low and go slow. Begin with limited hours to give your parent a chance to adapt and adjust.
- Ask the caregiver to give your parent some choices, rather than telling them what to do.
- Complaints about a caregiver should be taken seriously, but give it some time before changing caregivers. Otherwise, you may find yourself on a never-ending revolving cycle of new caregivers.
- Consider being present for the first few visits with a caregiver to ease your parent into the transition.
5. Refusing to Take Medications
This one can be tough, but here are a few suggestions to deal with this problem. Similar to going to the doctor, you may need to suss out what is driving their fear and find out small ways to help take care of it.
- Talk to your parent’s physician about which medications are necessary. Perhaps the elimination of some medications will make the task less overwhelming.
- Could there be swallowing problems? Taking large pills can be very uncomfortable. Try halving medications to make swallowing easier and more appealing.
- Ask your parent’s doctor about the possibility of crushing medications and putting them in applesauce or yogurt.
6. Angry, Agitated or Rude Behavior
Agitation and aggression are very frightening and difficult to know how to deal with. You may know your parent inside and out, but with dementia they may sound like a different person and behave in ways that could surprise you.
- Try using a calm, yet confident tone.
- Attempt to distract your parent when they start to get agitated and you might be able to prevent an escalation. Present another activity like looking at a photo album, folding laundry, or take them outside. If the environment is overstimulating due to too many people or noises, move the person to a quieter area.
- Consider music. Music has been shown to have a calming effect on people with dementia. Choose music that the person likes and use headphones to eliminate outside noise.
- Talk to your parent’s doctor about the possibility of medications to help calm agitated behavior. Approach this option with caution and ask about side effects or any other negative consequences.
- Look for opportunities to give your parent control. Ask them what they want to do each day. If they enjoy reminiscing, ask questions about their earlier life. Provide as much structure as possible to create a routine.
7. Refusing to Move to Assisted Living
At some point, there may be no other option than to move your parent to assisted living. Perhaps your parent’s caregiving needs have exceeded what you can safely provide. You can’t force someone to do something they don’t want to do, but you may have to cajole them to guide the process along.
- If it seems like a good idea, visit an assisted living you have in mind. Do this several times and introduce your parent to the staff.
- Try a respite stay for your parent. This is a short term stay in a furnished room to help someone adjust to the idea.
- When all else fails, you may have to make the move without your parent’s cooperation and hope that with time, things will settle down. Plan on frequent visits after move-in.
Can You Do Anything If Your Parent With Dementia Refuses Help?
The only legal recourse you have if your parent with dementia refuses help is to petition the court for guardianship. Healthcare power of attorney is useful but may not be the right kind of authority needed to take charge and protect your loved one.
With that said, guardianship is not a magic wand and comes with challenges of its own. On the one hand, you don’t want to be viewed as a neglectful family member. On the other hand, you still can’t force someone to accept help. Let’s look at a few ways guardianship might help the situation and other ways it could hurt it.
Guardianship will give you control over healthcare
Obtaining guardianship of an aging parent can allow you to contract with healthcare agencies on behalf of your loved one. Under normal circumstances, if a patient refuses to sign a contract for services, those services can’t be provided. As the guardian, you can authorize, manage, and monitor care for your loved one.
Guardianship will give you the legal authority to place someone in senior living
Although you have the legal authority, your loved one may still refuse. At that point, you have to decide what the best course of action is. Some people are comfortable moving forward with a move to senior care despite objections.
Guardianship may give you control of finances
Some states use the term guardianship to cover both health and finances and others use the word conservatorship for management of the estate. If your loved one is the victim of scams and financial exploitation, guardianship may be the only way to put a stop to it.
Guardianship can prevent someone from leaving medical care or senior living
With guardianship, you can legally prevent your loved one from leaving the hospital prematurely or moving out of a senior care setting.
On the surface, guardianship might seem like the answer to helping a parent with dementia that refuses help. However, the guardianship process via the court system can alienate family members from one another. If your loved one strongly objects to guardianship, it could irreparably harm your relationship.
Guardianship affords control but requires responsibility. Think carefully about whether this is an option you want to pursue. If it means protecting your loved one from physical, emotional, and/or financial harm, it might be worth it.
Other than guardianship, you may have no recourse to get help for a parent with dementia that refuses help. Since dementia is a progressive disease, the sad fact is that the worse it gets, the more influence you might have in convincing your loved one to accept help. Don’t give up. Keep trying to help your parent the best you can.
A Parent With Dementia Needs Your Help
Dealing with the emotions of a parent with dementia who refuses help can be confusing and sad. This is the person that raised you and guided you for most of your life. Now, it can feel like the roles are reversed. You are in the position of authority with the responsibility of making decisions to keep your parent safe and happy.
Dealing with a parent who has dementia is not something any of us expect to have to do, and it can be heartwrenching to see the vulnerability of a parent. On top of all that, you may feel resentment or anger. Acknowledge these feelings as normal and talk with someone about it if you think it will help. With planning and patience, it is possible to help your parent accept the care they need.
Source:
- “What is Dementia?” The Alzheimer’s Association. alz.org