Caring for Someone with Dementia (And Yourself)

Caring for someone with dementia can be quite challenging. In its early stages, dementia may appear as mild cognitive impairment, characterized by confusion, impaired judgment and forgetfulness. However, as time goes on, your loved one may be affected at a deeper, more concerning level.

Some people with dementia experience personality changes and may become aggressive both verbally and physically. They may display rude, hurtful behaviors, as though they’ve lost their filter for what is appropriate and what is not.

The reasons behind these personality changes can be different for different people. Your loved one may be feeling paranoid or fearful. Or perhaps they simply can no longer contain their impulses. It’s not uncommon for caregivers to say, “This is not the person I knew. She acts so differently now.”

Clearly, dealing with dementia is challenging. Hiring an home care agency that specializes in dementia care will make your journey a bit easier. They will explain how to deal with dementia and teach you the techniques, cues, and strategies that are most useful when caring for dementia patients.While you and your loved one are coping with dementia, it’s also critically important that you, the caregiver, look after your own needs, as well. Caring for someone with dementia can be very stressful. Dementia is typically unpredictable and that means no two days are ever exactly alike. Be sure you have your own support network and make it a point to rely on dementia resources and professional services, as needed.

The Signs and Symptoms of Dementia

The signs and symptoms of dementia can differ from person to person, and may include:

• Memory loss
• Challenges in planning or problem solving
• Difficulties with completing familiar tasks at home or work
• Inability to complete favorite leisure activities
• Confusion with person, place or time
• Trouble understanding visual images
• Difficulty understanding spatial relationships
• Problems involving words, either in speaking or writing
• Misplacing things and being unable to retrace one’s steps in order to find them
• Decreased or poor judgment
• Withdrawal from work or social activities
• Changes in mood and personality

Common Types of Dementia

The four most common types of dementia that require home care support include:

• Alzheimer’s Disease
• Vascular Dementia
• Dementia with Lewy Bodies (DLB)
• Frontotemporal Dementia

Alzheimer’s Disease

Alzheimer’s is the most common type of dementia, accounting for 60%-80% of all cases. It is a slowly progressive disease that can start with memory lapses and end—sometimes many years later—with disorientation, confusion, and difficulty walking, speaking, and swallowing.

If you are caring for a loved one with Alzheimer’s, pace yourself. It’s critical for you to get respite throughout the process to mitigate the risk of caregiver burnout. It’s a sad and powerful fact: many Alzheimer’s patients outlive their family caregivers, due to the emotional and physical strain caused by the disease.

Vascular Dementia

Vascular dementia is caused by impaired blood flow to the brain, as can happen when someone suffers a series of small strokes. Symptoms usually include impaired judgment and/or inability to make decisions, plan or organize.

Dementia caregivers typically see the progression of vascular dementia as a sudden decline followed by a plateau of stability. That’s because someone with vascular dementia can maintain a level of functioning until they experience another stroke or series of strokes.

As with Alzheimer’s, the duration of the disease process can go on for years. If you are caring for a loved one with vascular dementia, be sure to take advantage of respite. Caring for someone with dementia at home is quite challenging, and it’s likely you will need breaks now and then to mitigate the risk of caregiver burnout.

Dementia with Lewy bodies (DLB)

Lewy bodies are abnormal clumps of protein in the brain. They impede brain function and can cause a variety of symptoms, including memory loss, impaired judgment, hallucinations, agitation, and gait imbalance. Dementia with Lewy bodies progresses faster than Alzheimer’s, the behaviors of dementia can be more challenging to manage at home, and can progress to verbally and physically combative behaviors.

Management of dementia with Lewy bodies typically involves medications, which should be supervised by a gero-psychiatrist who is experienced with this type of dementia.

Frontotemporal Dementia

Frontotemporal dementia (FTD) is the result of damage to nerve cells in the front and side regions of the brain. Symptoms can vary from person to person and from one stage to another; however, in general terms, changes in the frontal lobe are associated with behavioral symptoms, while changes in the temporal lobe lead to language, emotional, and sometimes, movement disorders.

Behavioral symptoms may include social disinhibition, as well as problems with organization, planning, multi-tasking and impulse control. Language symptoms may include aphasia and slurring, while the list of possible emotional symptoms includes apathy, mood swings, and difficulty reading social cues. Some FTD patients also have gait disorders, tremors, and muscle weakness.

Those suffering from FTD cannot control their behaviors and often lack awareness of their illness, making it especially challenging for them to get the dementia care they need. What’s more, family caregivers often find it difficult to meet the physical demands of FTD’s movement symptoms.

Seven Stages of Dementia

Dementia care specialists use “stages” as a way to describe how far someone’s dementia has progressed. These stages are broad, and not everyone fits neatly into one or another. Moreover, sometimes one symptom may be quite pronounced, while others in the same stage are not as noticeable. A dementia care specialist has the specific expertise needed to conduct a comprehensive dementia care needs assessment and create a care plan for a dementia patient.

In its early stages, dementia may appear as mild cognitive impairment, characterized by confusion, impaired judgment and forgetfulness. As it progresses, dementia may diminish someone’s ability to do math, keep a checkbook or pay their bills. They may also fail to recognize common household items or know how to use them.

In the later stages, someone with dementia may no longer be able to recognize personal care items, such as a toothbrush, silverware utensils or the television remote. Some will no longer recognize their home or be able to recite their address or telephone number. They may not be able to accurately say the day, date and time. People in the later stages of dementia should not be left home alone. They require frequent help with activities of daily living, such as taking medication, showering and getting dressed.

To better understand how dementia is staged, take a look at the seven stages of cognitive decline most commonly used for evaluating Alzheimer’s disease, the most common form of dementia. (Note: Alzheimer’s is a terminal illness, and not all people who have dementia will progress to Stage 7.)

The seven stages of dementia include:

• Stage 1: No Impairment
• Stage 2: Very Mild Decline
• Stage 3: Mild Cognitive Decline
• Stage 4: Moderate Cognitive Decline
• Stage 5: Moderately Severe Cognitive Decline
• Stage 6: Severe Cognitive Decline
• Stage 7: Very Severe Cognitive Decline

Stage 1: No impairment

During this stage, the person is mentally healthy and functions normally. There are no memory loss issues.

Stage 2: Very Mild Cognitive Decline

If your loved one is in this stage, they may experience very minor concerns due to memory problems. For instance, they may temporarily misplace things around the house. This forgetfulness is indistinguishable from normal age-related memory loss, and someone in Stage 2 will still do well on memory tests. A physician cannot detect dementia.

Stage 3: Mild Cognitive Decline

In this stage, you may begin to notice that your loved one’s performance is affected in the areas of memory and/or cognition. Someone in Stage 3 will begin to have difficulty in many areas, including:

• Finding the right word during conversations
• Remembering names of new acquaintances
• Planning and organizing activities

If your loved one is in this stage, they may be unable to work or host family events like they used to. For example, your mother may find it too difficult to host a holiday get-together that includes purchasing gifts, baking, invitations, etc. Someone in Stage 3 may also lose things more frequently, forgetting where they put common items, such as their address book, or even more precious ones, such as their jewelry or other valuables. Physicians who know their patients well should be able to detect impaired cognition at this stage and planning for dementia should begin.

Stage 4: Moderate Cognitive Decline

In this stage, the clear-cut symptoms of dementia are apparent. If your loved one is in Stage 4, they may:

• Have difficulty with simple arithmetic, including the inability to manage finances, pay bills or calculate correct change when paying with cash at the store. Unfortunately, people at this stage are often taken advantage of when out in public, and they may need assistance paying bills, writing checks or keeping a checkbook.
• Forget details about their life histories. Having photo albums and other reminders about their life around the house may help to preserve someone’s memory at this stage.
• Have poor short-term memory. Someone in this stage may not remember what they ate for breakfast, or even if they had breakfast. A care plan for a someone with short-term memory issues is likely to include at least occasional in-home senior care.

Stage 5: Moderately Severe Cognitive Decline

Someone in Stage 5 needs help with many everyday activities, and some level of dementia home care is required. Some people in Stage 5 can sometimes function independently, but in general, people in Stage 5 are living with dementia and need frequent assistance. If your loved one is in this stage, they may be experiencing:

• Significant confusion. They may no longer recognize their surroundings, including their furniture, their car and their home.
• An inability to recall simple details about themselves. In Stage 5, your loved one may not know where they live, how long they have lived there, how many children they have or their own telephone number.
• Difficulty dressing appropriately. If your dad is in Stage 5, he may layer his clothes, put his shirts or pants on backwards or wear stripes with plaids and colors that clash. He may also dress inappropriately for the weather—wearing sweaters and a jacket when it is 84 degrees outside.

Stage 6: Severe Cognitive Decline

Someone in Stage 6 needs constant supervision and may require professional care. If your loved one is in Stage 6, their symptoms may include:

• Confusion or unawareness of environment and surroundings
• Major personality changes, including potential for severe behavior problems
• The need for regular assistance with the Activities of Daily Living (ADLs), including bathing and toileting
• Inability to recognize faces except for those of their closest friends and relatives
• Inability to remember most details of personal history
• Loss of bowel and bladder control (incontinence)
• Wandering, either within their home or outside and away from their home

In Stage 6, there is significant dementia risk for injury.

Stage 7: Very Severe Cognitive Decline

This is the final stage of Alzheimer’s, and it can last for weeks, months or many years. In Stage 7, someone loses their ability to respond to their environment. They may still be able to utter words and phrases, but they cannot communicate. They have no insight into their condition and need assistance with all activities of daily living. In this final stage, people may lose their ability to stand, sit, swallow or breathe.

Providing Care Yourself vs. Hiring a Dementia Home Care Agency

As you start planning for dementia care, you will need to consider the medical, functional, and emotional needs of your loved one. Dementia care is complex, so take the time to consider all of your options, which range from caring for someone with dementia yourself versus hiring a dementia home care agency. It’s important to consider:

• Finances. Taking time off from work to care for your loved one can impact your paycheck. Not only do you need to provide personal care and companionship, but you’ll also be responsible for transportation to and from medical appointments, errands, and social outings.
• Mental Health. As the responsibilities of caring for your loved one mount mental health can be affected, as many family caregivers experience burnout, resentment, depression, and even conflict with other family members.
• Physical Health. Caring for a loved one with dementia can be physically demanding. Your sleeping and eating patterns may be disrupted, and there are physical strains that come along with helping someone with mobility and transportation.
• Time. Dementia care is often 24/7. As a result, you’ll have less time for your own hobbies, social interactions, and general well-being.
• Relationships. When you’re caring for someone with dementia, the relationship between the two of you is bound to change. The quality time that you used to spend together is likely to be replaced by feelings of embarrassment, resentment, guilt, and worry.
• Concerns About Caregivers. A dementia home care agency will match you with a caregiver and coordinate all aspects of dementia care. Like selecting any service, there are pros and cons to consider before partnering with a home care agency. Make sure to do your due diligence to find an agency and a caregiver that best suit your needs.

Learning how to deal with dementia can seem overwhelming at first—which is why it’s important for you to take it step-by-step. A comprehensive dementia care needs assessment will create the foundation for a dementia care plan that can empower and encourage your loved one to live a joyful and independent life for as long as possible. As their needs change, additional caregiving may be required, and you may need to outsource certain responsibilities to an expert, ideally an in-home care agency with dementia specialists.

If your loved one were able to express their wishes, how would they like to be cared for? At Arosa, our “whole person, whole family” approach means their care would include not only safety and security, but also respect, dignity, autonomy, and meaningful engagement with their world.

© Arosa