The Caring Generation® – Episode 169 June 14, 2023. Caregiving expert, Pamela D Wilson discusses why persons with Dementia lose their ability to perform everyday tasks. Learn how to be a better caregiver by accepting dementia as a chronic disease that impacts the function of the brain.

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Caregivers ask why do simple things become difficult for persons with dementia. We will look at these difficulties by identifying early signs of Memory Loss related to executive function. We will also look at aspects of dementia that are out of the control of the person experiencing memory loss that caregivers might not consider.

If you are caring for an aging parent with memory loss, check out Pamela’s online module Creating a Plan for Loved Ones With Memory Loss. 

So if you have a loved one who you suspect has memory loss but is not diagnosed with dementia, these signs may be helpful to confirm that it may be time to seek a diagnosis so that you can make a plan to care for loved ones. We will also discuss concerns mentioned by caregivers who become frustrated with the behaviors of loved ones who have memory loss.

Through this discussion, I hope you will better understand how memory loss affects everyday life for persons with dementia.

Executive Function Skill Gaps

So, let’s begin with executive function skills that relate to planning, following processes, focusing attention, and juggling multiple projects. With this in mind, small signs of memory loss begin 10 to 20 years before a formal diagnosis of dementia that often go unnoticed.

These activities include the ability to add, subtract, or complete simple mathematical equations that support balancing a budget or a checkbook ledger. Other noticeable changes include greater difficulty using a home computer or a cellphone. Routine activities like sending emails, updating spreadsheets, making phone calls, or completing online transactions that suddenly become challenging can be early signs of dementia.

Decreased Socialization and Loss of Daily Skills

Add to this decreased socialization that leads to isolation. For example, individuals may stop attending social activities requiring executive function skills to play bridge, chess, or other games. They may be struggling to participate at the same level.

It is also possible that others in a person’s social group have become critical of their skills. So maybe a person who always won at bridge now cannot keep track of the game.

The loss of other skills that were once top-notch can indicate memory loss. For example, mom or dad always kept a clean house or workshop, and now the house is messy or disorganized.

A peek inside a kitchen cabinet or pantry can reveal four boxes of the same cereal or multiple boxes or cans of other items. This type of disorganization occurs when organizational and planning skills are necessary to inventory items in the home before visiting a grocery store.

Missing Telltale Signs of Memory Loss

In the early stages of dementia, these little signs may not be noticeable outside of a spousal relationship where two people are together 24 hours a day and seven days a week. And even then, if a spouse or partner does not know about dementia or Alzheimer’s disease, these changes may be attributed to advancing age or other chronic illnesses.

Adult children who may not see their parents frequently can also miss these telltale signs of memory loss. As memory loss progresses to the point that may be obvious, persons with dementia may be showing more telltale signs.

These include missing doctor appointments and calling adult children multiple times on the same day to ask the same questions. Pet care may be lacking if litter boxes go unchanged or dogs are not being walked.

Spouses or adult children caregivers may notice dated medication bottles in the home where the bottles were filled, but medicines are not taken. Loved ones may be wearing the same soiled clothing day after day. Hygiene in the way of long fingernails, unwashed hair, or body odor can become more common because persons with dementia forget to groom or bathe.

These changes can be subtle and not noticed if a parent lives alone. Or they may not be recognized until mom or dad gets lost while driving, or the electricity in the home is shut off because a bill was not paid. I have had clients who forgot to pay their health insurance premiums. These types of activities that are simple for most people become very difficult for persons with dementia.

Understanding the Impact of Memory Loss

If you are a family member of a person with dementia, it can be hard to understand how all of this can happen when your loved one was fully capable of taking care of themselves. A caregiver recently asked me how a parent knows to keep repeating the same question over and over and over again.

My response was that a person with dementia has no idea they are asking the same question repeatedly. The assumption that family members make is that persons with dementia are intentional about their actions—as if the person with dementia plans to ask the same questions or plans to do things to irritate their spouses or adult children. This is not usually the case.

Understanding memory loss means reminding oneself that dementia is like having a faulty light switch or a bad connection that prevents the brain from realizing, “Oh, I just said that, or Oh, I just asked that question.” A loved one with memory loss has no idea they are repeating or not remembering information.

Find more tips to care for loved ones with dementia on Podcast Episode 151. 

A Lack of Insight

Some behaviors associated with memory loss seem more troublesome for caregivers because they focus on problems or loss. At the same time, the person with dementia has no idea that their behaviors positively or negatively affect another person.

While some behaviors like repeating the same question over and over again, pacing back and forth, or watching a movie for the hundredth time may try the patience of a caregiver, if the behavior doesn’t harm the person with dementia or anyone else, then it’s really not a problem.

Language skills become challenging for persons with dementia, who eventually may be unable to recall the name of a spoon or a fork. As the caregiver, what you want to consider is the state of mind of the person with dementia who is doing the best they can with a broken brain.

In this case, how important is it for you to be right when mom or dad calls a spoon a shovel or thinks that a spoon is a pencil or pen? At this point in the disease, the person with dementia cannot learn new information or recall lengthy explanations that caregivers want to offer.

Changing Abilities and Expectations

Caregivers must change their expectations of loved ones with dementia and celebrate the things that loved one can still do, no matter how simple the task. If your parent can still dress, that’s a win. If they can still go to the bathroom alone without needing a reminder, that’s another win. All of these skills will eventually fade.

So let’s review a list of additional activities that become difficult for persons with dementia. One skill that is often not considered is walking. This can be a skill that is not lost until later in the course of memory loss unless there is a fall or accident that results in a person with memory loss forgetting how to walk.

Walking is an activity that should be prioritized and practiced for as long as possible. Standing from a sitting or lying down position and walking is a significant factor for maintaining physical strength and remaining at home.

Persons with dementia who become wheelchair-bound or who forget how to walk often have to move into care communities because their caregivers do not have the physical strength to lift and move them.

Walking and Wandering

Persons with dementia can wander inside and sometimes outside the home. If mom or dad were previously active, walking inside the house may be routine. On the other hand, wandering can also result from anxiety, boredom, or being overstimulated.

Some types of dementia, like Lewy Bodies, can result in feelings of paranoia or visual hallucinations. Having this experience can result in anxious wandering.

Anxiety related to pacing or wandering can result from caregivers trying to encourage a person with dementia to perform tasks beyond what they can do. A person with dementia may begin pacing if they feel pressured to watch television, read a book, play a game, or do an activity that their brain can no longer process.

Caregivers can attempt to distract loved ones with simple relaxation techniques like playing calm music, offering a hand or a back massage, or using aromatherapy.

Factors That Result in Mood or Behavior Changes

Boredom is another factor that can result in mood or behavior changes, especially if a loved one was previously very active in sports or hobbies. Boredom can also result in mixing day and night times.

Persons with dementia may sleep during the day if they are bored and be awake all night which is challenging for caregivers who work. Developing an activity calendar for spouses or aging parents that includes time outside in good weather to work in the yard or garden, or sit out on a patio or deck can help reduce boredom. An adult day program may be an option for persons living at home.

Adult day programs offer various activities for persons of all memory levels and physical abilities. These programs can also serve as a bridge for keeping loved ones at home and allowing the caregiver to work during the day.

For 24/7 caregivers, simple activities like folding laundry, sit, and be-fit exercises, adult coloring books, or helping with meal preparation can make the day more enjoyable. One of the most important considerations is establishing daily and weekly routines. Initiating similar and familiar activities can resolve many unexpected behaviors and give persons with dementia a sense of stability, comfort, and belonging.

Responding to Changing Communication Abilities

The communication abilities of persons with dementia will continue to decline throughout the disease, so caregivers will have to continually adjust how they communicate verbally and physically. Asking questions of a person with dementia may be possible early in the disease but will become impossible as time passes.

Instead of asking questions, offer choices. For example, do you want A or B to eat? Do you want to wear A or B?

Eventually, choosing one option over another will become problematic. At this point, it is up to the caregiver to know the choices a loved one with dementia would have made for daily activities, how to dress, what to eat, etc.

Incorporating verbal and non-verbal actions like smiles and hugs can offer reassurance to lower anxiety levels of persons with dementia. Patience is essential to avoid rushing a person with dementia to perform any activity, especially those that require multiple steps.

Providing Support One Step at a Time

Activities with multiple steps benefit from giving one direction at a time and sometimes even using hand over hand. For example, the process of brushing teeth can be broken down into steps. Say, “Pick up and hold the toothbrush.”

The caregiver can then place toothpaste on the brush. Then the caregiver can put their hand over the hand of the person with dementia and say, “Let’s brush your front teeth together. “

Considering the time and effort it can take to complete a single task, it is essential to realize that caregiver burnout can profoundly affect the behaviors of persons with dementia who can pick up on facial and body expressions.

When a caregiver becomes agitated or frustrated, the person with dementia will likely mirror their behaviors. Frequent breaks for the caregiver are essential in high-stress situations. Using some of the calming activities suggested earlier, like playing calming music or using aromatherapy for persons with dementia, can be equally beneficial to caregivers.

Monitoring Ongoing Changes in Health

In addition to simple things becoming more difficult, persons with dementia will experience ongoing changes in health. For example, episodes of delirium are noted by increased confusion, higher than normal levels of agitation, and changes in consciousness.

Delirium is often caused by some change in physical condition. For example, delirium can result from dehydration caused by not drinking enough fluids, consuming alcohol, taking prescription medications, a change in medicine, a urinary tract infection, pain that results from constipation, a dental infection, or another injury.

Delirium is a serious condition that should be considered a cause for prompt medical treatment as it can also relate to life-threatening sepsis. If your loved one has a significant change in their level of attentiveness or becomes exceptionally agitated, take them to the nearest emergency room or call 911 so that they can receive prompt treatment.

Sundowning and Reassurance

Difficulties with executive function and short-term memory loss are often the main cause of persons with dementia needing increasing levels of care from loved ones. Along with needing support in these areas is often a need for reassurance that everything is okay.

Persons with memory loss experience sundowning episodes late in the afternoon. At this time of day, they may focus on a desire to complete a previously routine activity.

For example, a spouse may want to go to work, or a mom may feel she must pick up the kids from school or make dinner for the family. This desire can arise from visual or auditory cues like a clock striking five o’clock.

These experiences are real for the person with dementia. Caregivers can support the wishes of loved ones to complete these activities in various ways.

Using Redirection

Redirection is a skill that all caregivers can learn that can address the issue at hand and provide a diversion that gives the person with dementia an opportunity to feel valued.

For example, if Dad wants to go to work, you can say something like, “Today is a holiday, so you don’t have to go to work. Since you have the day off. Since you have a free day, can you help me with X?” and then give dad a task that you know he enjoys.

For a mom who wants to pick up the kids from school, you can ask mom about her experience raising children or experiences with her mother. So, “Tell me about your children. How many do you have?”

Or, it sounds like you were very close to your mother. Tell me about her.” These types of questions involve accessing long-term memories, which are often preserved. If you have photo albums of family, these can also serve as a distraction during times of sundowning.

Responding to Family Members in Denial

Other complications include spouses and adult children who are in denial about the degree of memory loss experienced by a husband, wife, or aging parent. Interactions with these family members who lack sensitivity to the changes resulting from memory loss can cause persons with dementia to become agitated or distressed.

For example, adult children who visit and ask a parent for advice, those who tell long stories about their experiences and expect a parent to follow the information or offer advice can cause stress-related behaviors.

More importantly, any family disagreement or conflict should not play out in the presence of a person with dementia. Placing a parent with dementia in any uncomfortable situation where they may be expected to favor one child’s needs over another is unfair and can be considered elder abuse.

Even though persons with dementia may not be able to follow the conversation, they can see the distress on the faces of the individuals present, hear the tone of voices, and pick up on the distress of the encounter.

Background Noise and Overstimulation

Other causes of unintentional upset for persons with dementia can be a television playing in the home with disturbing or harmful content like the mention of a car accident. If young children live in the same household as a grandparent with dementia and play noisy computer games or loud music, this can also cause unexpected agitation.

Caregivers must pay close attention to the home environment, including television shows or radio programs that play in the background, which can result in persons with dementia becoming agitated, fearful, or having nightmares.

How often do you watch a scary movie and then have a nightmare about it? Persons with dementia experience similar events. When in doubt, find old television programs or a variety of music shows that your parents used to watch and play as a positive distraction.

Sight or Hearing Loss

For caregivers of persons with dementia who experience sight or hearing loss, managing advancing care needs can be more challenging. For hearing impairment, hearing aids may help for some time. However, hearing aids can easily be lost.

Additionally, persons with dementia may eventually not want anyone touching their ears or attempting to insert a hearing aid. If a person with hearing loss can still comprehend written words, using a dry-erase board or a notepad can be a method of communication.

For aging parents who have vision problems using contrasting colors can be helpful. For example, if a person with dementia uses a walker, bright colored tape can be placed on the handles of the walker where the hands should be placed to use the walker.

Plates with divider sections in different colors can be used to differentiate types of foods. Additionally, utensils with colored handles can be used to identify a spoon versus a fork versus a knife.

Moving in With Parents or Vice Versa

While adult children often consider moving aging parents with dementia into their homes, there are many people to consider, including young children and spouses. While adult caregivers can learn to adjust their behaviors and responses to aging parents with dementia, young children may not understand why grandma or grandpa becomes mean or temperamental.

How will having a parent with dementia in the home affect parent-child relationships? Will relationships with children suffer from time loss because of the care requirements of a parent with dementia?

What additional expenses will be incurred by moving a parent into the home? Will these expenses end the hopes of children participating in after-school activities or attending college? What will be the effect on marital relationships?

As Simple Things Become More Difficult, The Pressures of Caregiving Rise

While there may be a sense of responsibility or duty to care for loved ones with dementia, the pressures of being a caregiver rise as simple things become more difficult. There is also the sense of ongoing grief and loss that family members experience as the years pass, and memories of who the children are fade.

The first time an aging parent fails to recognize one of their children is heartbreaking. Spouses may also become unable to recognize spouses.

While many caregivers want to keep loved ones at home, factors related to memory loss can make this choice impractical. The physical care needs of a person with dementia can surpass what is safe for the caregiver to provide.

When Caring for A Person With Dementia Becomes Unintentionally Harmful

A wife or daughter who weighs 120 pounds may be no physical match for a spouse or parent who weighs 250 pounds and needs to be lifted or transferred out of bed into a wheelchair or onto the toilet. Incontinence is another issue that often results in persons with dementia being placed into a care community.

Complicated health situations where multiple chronic illnesses exist can be wearisome for caregivers who are on call 24/7 to manage diabetes care, treat wounds, manage catheter care, respond to care refusals, make accommodations for special dietary needs, and more.

While many caregivers willingly take on these responsibilities out of love, an equal number realize that this level of commitment is negatively affecting their health. When caregivers arrive at this point of providing total care, few have the energy to investigate other options for help because of complete exhaustion.

The result is the caregiver’s health and well-being going downhill, with the person needing care and sometimes dying first because of health complications. Dementia, Alzheimer’s, and other memory disorders are caused by malfunctioning cells in the brain.

This inability of the brain to function as it once did is the reason that simple things become difficult for persons with dementia. Caregivers who become exhausted can experience similar problems with thought processes and problem-solving.

Caregivers with a strong sense of duty will sacrifice their lives, marriages, health, and well-being to care for another person and be left with no one to care for them. Caring for a person with dementia can be a lonely, self-imposed journey for caregivers who cannot balance reasonable efforts with hard choices related to self-preservation.

Make Dementia Plans Early

When suspicion of memory loss exists, the best plan is to seek a medical diagnosis and hold family discussions about what is practical and reasonable. While many individuals do not want to burden their family members, they may not have financially planned for their own care.

In these cases, the investigation into options for care, including public programs like Medicaid, should be done as early as possible so that options can be identified for the care of persons with dementia that do not solely rely on other family members.

These steps can reassure the person with dementia that their care needs will be met. Family caregivers can gain peace of mind about their expected level of involvement.

By balancing the needs of persons with dementia and their caregivers, managing the progression of memory loss can follow a well-thought-out plan that optimizes the entire family’s well-being.

Looking For Help Caring for Elderly Parents? Find the Information, Including Step-by-Step Processes, in Pamela’s Online Program.

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