The Dementia Primer: 7 Pitfalls of Caregiving for People with Dementia

Bob, one of our owners, tells the story of taking a client to a doctor’s appointment.  While sitting in the waiting room with “Lila,” she looked around and said to him in a normal volume, “I can’t believe there are so many fat people here.”  Because Lila had dementia, her social filter had deteriorated, so Bob just shrugged it off.  He figured everyone could tell something was up with Lila anyway since she was wearing her underwear on the outside of her pants.

Caring for a loved one with dementia or Alzheimer’s can have its moments of joy and frustration.  You need to have a good sense of humor, a heaping helping of love, and more than just a dollop of compassion.

It’s particularly challenging to meet clients whose families don’t understand the nature of dementia.  It’s easy for those taking care of elderly parents with dementia to slip into the mindset that their loved one is making a choice to have memory loss.  When you assume someone is just being difficult, you respond in a very different manner than when you realize the disease and its progression is something that can’t be controlled.

Dementia, Alzheimer's, Affordable Home Care, Elder Care in Minnesota, Caregiving Elderly, Eldercare at Home, Disability Home Care, Companion Home Care, Senior Care Blog1.  Scolding or Belittling

Memory loss is not a choice, and it’s sad to see a person with dementia who feels belittled for his memory loss.  In an effort to correct dementia-related behaviors, sometimes family caregivers will get short or become so frustrated, they start to insult the person with dementia.  Reminding Grandpa that he’s asked about lunch five times doesn’t change his memory loss.  When a senior with dementia faces constant correction on the part of a frustrated or burned-out caregiver, the result can be emotionally detrimental, leading to even more problem behaviors to handle.

2.  Time Outs or Other Punishments

Although a senior with advanced dementia may exhibit traits similar to those found in toddlers, caring for people with dementia is not the same.  Whereas a parent might give a time out to a child to remind him not to hit mommy, such disciplinary actions simply don’t work on seniors with dementia.  Those with dementia lose their short-term memory first, so they will not be able to retain the lessons of any intended punishments.  Not only is punishment ineffective, but it’s an inappropriate way to respond to an adult, especially one with dementia.  If emotions have elevated to such a point that the family caregiver is doling out punishments or shaming the person with memory loss, it may be a sign that the family caregiver is the one who needs a time out.

3.  Arguments

There is no point to arguing with someone who has dementia.  If you were looking at a red crayon, someone could talk, debate, or yell until they had no voice, and he would never be able to convince you it was blue.  For those with dementia, their reality is just as real to them as yours is to you.  If they see a snake on the floor, for example, assure them you will take care of it.

4.  Power Struggles

Most people—whether with dementia or not—want to maintain control over their lives.  Just as you, at your age, want to be in control of your day-to-day activities, so might a senior with dementia.  As a result, Grandpa may assert himself by making unwise decisions and holding his ground on issues related to medication, living arrangements, or regular bathing.  Avoid power struggles by understanding what triggers them in Grandpa’s mind, and work to give him choices so that he feels a sense of control over his life.

5.  Pick Your Battles

People with dementia may exhibit a variety of effects from the disease, and people who were once easygoing and friendly may now be obstinate or difficult in general.  Because the section of Grandma’s brain that handles reasoning and judgment may be deteriorating, she may refuse to bathe, take medications, or eat healthfully.

Instead of suiting up for battle over every issue related to Grandma’s care, determine which ones are the most important.  If Grandma, for example, refuses to bathe three times a week, eat three meals a day, and go for walks daily, you might have to settle with her bathing once a week, eating three meals a day, and walking once or twice a week.  Spend your limited energies on the battles that are most important to her well-being, and realize that, for self-preservation, you may have to let the smaller stuff go.  Let go of perfectionism.

6.  Neglecting Yourself

It’s so easy for family caregivers to function in crisis mode and to sacrifice their own personal health in order to take care of a family member’s health emergencies.  Since dementia is a progressive disease, family caregivers need to prepare themselves for the long-haul, and this includes caring at a maintainable pace and not burning themselves out.  If you are caring for a loved one with dementia, and you find yourself routinely exhausted, overwhelmed by the thought of care-giving for your loved one, or regularly engaging in power struggles and arguments with them, it’s probably a sign that you need to take care of yourself.

It’s important for family caregivers to take care of their own mental and physical well-being.  When a caregiver ends up with a health crisis, more often than not, the care receiver can no longer stay at home.  Don’t hesitate to seek assistance from other family members and friends.  If needed, draw on additional resources available through the county or state, and call on the assistance of outside agencies if needed.

7.  Being Insulted

Depending on the part of the brain affected by the disease, some people with dementia lack their social filters.  Grandpa may say hurtful things that he doesn’t really mean or would never have said before his dementia.  This can be as simple as comments about weight or wanting you to leave him alone, or it can be more painful, with profanity-laden insults or virulent verbal attacks.  It’s important not to take these comments personally and to remember that they are not coming from the father you’ve known and loved your whole life.  They are coming from the disease.

 

Remember that managing the care of someone with memory loss is a constant process of trying different interventions until an effective intervention is found.  Assessment and re-assessment are par for the course.

Be sure to check out our primers on the 8 Things You Need to Know About Dementia and Alzheimer’s, 6 Tips for Working with People with Dementia and Alzheimer’s, and 12 Tips on How to Get Someone with Dementia to Eat.

Read caregiver Jody’s personal journey of facing her own mother’s dementia diagnosis for additional insight.

If you’ve been caring for a loved one with memory loss, we’d love to hear your tips.  Please comment below.

Julie Ellingson, LSW

January 12, 2012


Tags: , , , , , , ,

Leave a Reply