Dementia: Knowing When to Step-In

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By Leila Thayer Malone

Many changes occur when you have a loved one living with dementia. One of the most challenging of these is the change in the dynamics of your relationship. Whether you are a spouse, adult child, sibling, or friend, it can be difficult to grapple with these changes. For adult children, it can be especially difficult for a parent to rely on you for care; for a spouse, what had been a 50/50 partnership will begin to feel much more one-sided; and for siblings or friends, it can be challenging to know where the line is between support and reliance. 

Regardless of your relationship to the person with dementia, as a caregiver you will have to make difficult decisions that the person may disagree with. It is important to recognize when to step-in and when to empower yourself to ensure the person’s safety and wellbeing. Balancing the person’s need for autonomy and his need for safety is an essential skill the caregiver must learn.

Let us review the changes that occur in the person’s ability to think as dementia progresses. Dementia causes memory loss that can become dangerous. For instance, he may forget that he has left the stove on, posing a serious fire danger. Her behavior may change and she may become more suspicious, fearful, and easily confused. He is much more susceptible to financial scammers, and can be taken advantage of. Her physical abilities may be affected, and she can begin to loose her balance more frequently. His sense of time and space may be altered, increasing the possibility of his forgetting his way home from a familiar place. 

All of these changes put your loved one at risk for both physical and financial harm. As a caregiver, you may have to grapple with the idea that he is no longer able to make decisions for himself. Unfortunately, this is often even more difficult for your loved one to accept. Maintaining her  autonomy is important, and it is essential for the caregiver to respect that and help the patient preserve it for as long as possible. Still, the time will come when the caregiver must step-up and make decisions for his loved one. 

Regardless of the relationship, ensuring the safety and wellbeing of the person with dementia is a key role of any caregiver. Many caregivers will face fierce opposition when it comes to sensitive topics, such as continuing to drive or living independently. This is common; the person with dementia will recognize that her autonomy and independence are slipping away. These types of decisions are difficult and uncomfortable for both of you, but will be common throughout your journey as caregiver.

The first (and most important) tip is to never argue with a person with dementia. Consider, dementia affects a person’s ability to reason. Logical arguments about his safety and your concern for him may not be heard or understood. Yet not making and implementing the decision does not resolve the safety issues at hand. As the person without cognitive impairment and the person responsible for someone with impairment, it is essential that you assess the risks for physical or financial safety and be proactive.

Consider, it is also important to choose your battles. If your loved one’s safety is not at risk, then it is generally better to leave well-enough alone. For example, if he is still able to dress himself, it doesn’t really matter if he wears mismatched clothing. The important thing is that he has the  opportunity to make his own choices without any endangerment or repercussion. Similarly, if she enjoys cooking but you are concerned about kitchen accidents, it may be better to stay nearby while she cooks instead of banning her from the kitchen. However, if it is a question of driving or climbing a ladder to clean the gutters, you may want to interfere.

Beyond ensuring your loved one’s actual safety and security, your role as a caregiver is to ensure that she feels safe and secure. If you have recently moved her out of her home and into a facility with memory care, consider making her new home feel as familiar as possible. Bring her favorite blankets and clothes, hang her favorite pictures, and most importantly—be there for her as much as you can as she adjusts to her new environment. 

No matter what stage your loved one is in, productive communication is possible. Maintain eye contact with him as you discuss these decisions with him; use a calm and gentle tone without sounding condescending; avoid arguing or reasoning; tell him what your decision is and stand firm; allow him to express his displeasure, but do not change your carefully thought-out decision because of his reaction. You may find that he will adjust to the changes more quickly than you had thought. 

Always remember that as the primary caregiver, you are responsible for your loved one’s safety and wellbeing. Regardless of your relationship, you alone are responsible for making decisions that are to her benefit and will keep her safe. These decisions should be balanced with your striving to maintain her autonomy and her sense of wellbeing. 
Pick your battles, but stand firm when safety is at stake. 


Learn more at the Alzheimer's Association of the Central Coast at https://www.alz.org/cacentralcoast

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PitMix Aug 24, 2020 10:37 AM
Dementia: Knowing When to Step-In

What advice do they have for a family with no children and probably no resources to pay for an expensive care home? That will be an important question for a bunch of people.

a-1598290819 Aug 24, 2020 10:40 AM
Dementia: Knowing When to Step-In

MediCal facilities have long taken care of this option. They are pretty grim when you visit them but they are out there. Pay a visit up front when you start your own long-term care planning process. Plus if you know this will be the case, you do need to plan ahead. Find a location where low cost care can be more readily available and start saving for it now. This is your responsibility; not anyone else's.

seahorse Aug 24, 2020 08:02 AM
Dementia: Knowing When to Step-In

We learned it is essentially impossible to keep someone with cognitive decline in their home with hired caregivers. We tried almost every caregiver agency serving Santa Barbara and not a single one employed properly trained staff. The caregivers required almost as much oversight as the person in the early stage of dementia. The only solution would have been a full-time live-in caregiver.

The best option is a high quality residential facility that provides an active recreational program. Dementia sufferers live in the moment, so the more activity you provide the more they will enjoy their moments. Moving someone in the early to mid stages of dementia is traumatic and stressful. Make it easier on your children by choosing a place for yourself now, before you start repeating the same stories every 5 minutes.

a-1598246985 Aug 23, 2020 10:29 PM
Dementia: Knowing When to Step-In

As a long-time family caregiver and manager, STEP IN EARLIER THAN YOU THINK YOU NEED TO. I tried to convince one parent and a sibling early... Of course I was right. I was taking the cargiver course given by our local Alzheimer's Association branch. I highly recommend it. It will be educational and enlightening on-line too.
A diagnosis is not required to benefit from this information. Vascular dementia is common.
https://www.alz.org/help-support/resources/care-training-resources
https://www.alz.org/help-support/caregiving

And SB's Center for Successful Aging. I benefited hugely from one of their support groups.
http://csasb.org/home.aspx
All good wishes and blessings to all involved in care.

MountainMan4865 Aug 23, 2020 10:02 PM
Dementia: Knowing When to Step-In

That sounds like a mild form of aphashia - which can be the result of a stroke or TIA ( transient ischemic attack). I think, in my experience, that TIAs afe often over looked, and that the effect of them are attributed to dementia. https://www.stroke.org/en/about-stroke/effects-of-stroke/cognitive-and-communication-effects-of-stroke/types-of-aphasia. Either way, this is good information for those of us dealing with older parents and loved ones.

winter Aug 23, 2020 08:41 PM
Dementia: Knowing When to Step-In

Good information...I have been a caregiver, for a long time.
Often, with dementia, or full blown Alzheimer's, families don't pick up on signs.
And many people I have taken care of, hide the symptoms...tell you they are fine, cleaning ,cooking, laundry... when they can't.. is best to have a doctor take away the drivers license...

Minibeast Aug 23, 2020 07:21 PM
Dementia: Knowing When to Step-In

No. "Loose" used when the word should be "lose" is more of a bad grammar situation. This mistake is actually quite common. Early signs of dementia, e.g., when failing to use "the right words" is more like a speaker of English as his/her Mother Tongue saying "fatilities," when the word meant is "fatalities." Or saying "susbesdig" instead of "suspected." My other favorites: infantroopen (?), heroilynn (heroin), ice offices (officers), delegitimatize (?), transpants (transplants), resaption (reception), herridge (heritage), benefishers (beneficiaries), protecterd (protected), pivittable (pivotal)--------to see more:------ https://www.youtube.com/watch?v=UE9BXkQ-SRc

sandy1 Aug 23, 2020 07:02 PM
Dementia: Knowing When to Step-In

My main takeaway is : Maintaining her autonomy is important, and it is essential for the caregiver to respect that and help the patient preserve it for as long as possible. Still, the time will come when the caregiver must step-up and make decisions for his loved one. Balancing autonomy and intervention can be tough at times.

webster Aug 23, 2020 06:34 PM
Dementia: Knowing When to Step-In

One of the early signs of dementia is failing to use the right words, like using Loose instead of Lose, as in, "Her physical abilities may be affected, and she can begin to loose her balance more frequently."

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