Living with a Dementia Patient: Understanding, Coping, and Caring

Most of us know, or will know, someone who suffers from dementia, whether it is our spouse, parents, or grandparents.  According to research from the University of California in Irvine, by the time we are 90 years old about 40% of us will have dementia.  At age 85, about 20% of us have it.  At age 80, about 10%.  If we live long enough, most of us will eventually either get dementia ourselves or live with someone who has it.  So, how can we or our family members handle this difficult period of time, without going completely crazy?  

Living with someone who has dementia is both challenging and emotional. Dementia is a broad term for a decline in mental ability severe enough to interfere with daily life. It includes various conditions, the most common of which is Alzheimer's disease although there are other types such as vascular dementia and Parkinson's dementia. Caring for a loved one with dementia is paved with emotional stress, adjustments in daily living, and the need to understand the illness itself.  Since both my husband and my mother had dementia in the years before they died, I'll try to shed some light on the experience of living with someone with dementia and offer a few insights into understanding, coping, and caring for a loved one with this condition.

You are almost certain to want more information after you read this brief article.  I highly recommend you use this Amazon link to check out: "The Dementia Caregiver's Survival Guide." (Ad). It has a 5-Star rating and you will find yourself referring to it over and over again. 

Understanding Dementia

Dementia is not a specific disease, but rather a general term that describes a wide range of symptoms associated with a decline in memory or other thinking skills severe enough to reduce a person's ability to perform everyday activities. The World Health Organization (WHO) notes that around 50 million people worldwide have dementia, with nearly 10 million new cases every year. Alzheimer's disease accounts for 60-70% of cases. Understanding dementia begins with recognizing its symptoms, which can vary greatly, but the symptoms commonly include:

Memory loss that disrupts daily life (such as getting lost, forgetting how to do things)

Challenges in planning or solving problems (like paying bills or planning trips)

Difficulty completing familiar tasks (cannot following recipes)

Confusion with time or place

Trouble understanding visual images and spatial relationships

New problems with words in speaking or writing

Misplacing things and losing the ability to retrace your steps

Decreased or poor judgment (making unnecessary purchases or falling for scams)

Withdrawal from work or social activities (isolating)

Changes in mood and personality (unusual bursts of anger)

As you can see, signs of dementia can begin to crop up years before people begin to stop recognizing their loved ones. When my husband began to develop dementia, memory loss was NOT the first or the most evident sign.  He recognized family members, although he forgot the names of some friends or when we had seen them last.  The symptom that was the most noticeable was that he began to lose the ability to use technology.  He constantly fretted that his cell phone was broken, that "Google changed his computer" overnight, and he even began to have trouble using the remote control on our TV.  Later, he began to show signs of "poor judgment," including opening credit card accounts which I did not know about until after his death.  He also came very close to becoming a scam victim several times.  Fortunately, I was able to prevent him from acting on the scam calls he received.  I had to be careful constantly, and try to stay aware of everything he was doing. 

On the other hand, my mother became a "wanderer" when she developed dementia. She would leave my sister's home, where she lived, and wander to the homes of neighbors, who would call my sister.  She also lost the ability to pay bills and handle money.  Like my husband, my mother knew who everyone was in the family. It's important that you do not wait for a family member to forget your name before you recognize their developing dementia.

If someone in your family begins to show these types of signs, or any of the others, it is important that family members watch to make sure they are not doing anything which could cause them harm, either physically or financially. 

At the end of this article is a list of resources which you can use to read more about dementia so you can understand it even better.  Understanding it helps, although we still need to learn how to cope with the impact of it on our own lives, as caregivers.  Many times, the caregivers for someone with dementia will die before the patient who has dementia.  It is a very stressful life for the caregivers.

Coping with the Emotional Impact

Living with someone with dementia can take an emotional toll on the family members and caregivers. Feelings of grief, loss, frustration, and guilt are common. The gradual decline of a loved one's cognitive abilities is a source of grief and mourning for caregivers, even while their loved one is still alive. This is often referred to as "living grief, " where the person is still alive, but you grieve for the loss of the person they once were.  I know that I experienced this as I watched my bright, successful husband decline to the point where he could not even use a television remote control.

Coping strategies may include joining a dementia support group, counseling, and engaging in self-care practices. Education about the disease is crucial, as it helps in understanding the reasons behind behavioral changes and how to respond to them effectively. You need to remind yourself daily that they are not intentionally creating problems for you. The Alzheimer's Association provides resources and support for those navigating this journey.

Providing Care

Caring for someone with dementia requires patience, flexibility, and an understanding of the person's needs, which will change as the disease progresses. The care approach should be centered on respect, empathy, and maintaining the dignity of the person with dementia. Key aspects of care include:

Creating a Safe Environment: This may involve making modifications to the living space to prevent falls (especially if they have Parkinson's Dementia or similar disorders), ensuring safety in the kitchen, and installing locks on doors to prevent wandering.  You also need to make sure that you check after they do anything. You will want to be sure they have closed the refrigerator door, not left water running or turned on an appliance or the burner on a stove.  I constantly turned off appliances and closed doors after my husband used appliances, even when he was in the early stages of dementia, and I did not yet understand what was going on.

Establishing a Routine: People with dementia benefit from having a daily routine, which helps to reduce confusion and provides a sense of security.  Even in the early stages of dementia, a routine is helpful so they know when to expect things to happen.  Write things on a calendar and remind them of important appointments.  This was something that I practiced daily.  When he could no longer use the calendar on his phone, I kept a large wall calendar and wrote down appointments and other events on it.  We put a big X on each day after it was finished. 

Communication: Use simple words and sentences, maintain eye contact, and be patient in waiting for your loved one's response. Nonverbal cues and body language are also important in communication [5]. You need to make sure they are paying attention when you tell them something important, especially in the early stages.  Many people with dementia do not realize they have it, and they still try to do things for themselves.  It is important that you have their attention when you want to tell them something important, such as when they have a medical appointment, or when visitors are expected.  Do not be surprised if you have to repeat things often.  I know that I did. 

Activity Engagement: Engaging the person in activities that they enjoy and are able to do can enhance their quality of life and reduce behavioral issues. Tailor activities to match the person's interests and abilities.  Whether they enjoy crossword puzzles, crafts, or doing things on a computer, encourage them to stay busy and active, even if they need a little assistance from time to time.  Things they have done for a long time in the past are likely to be easier for them.  For example, some dementia patients can continue to play bridge and other complicated games for a long time, even when they have problems in other aspects of their life.  I was fortunate to have a caregiver for my husband three mornings a week.  He would drive my husband out to his favorite coffee shop, take him shopping, and sometimes just take him for a drive along the coast, which delighted my husband. 

Healthcare Management: This includes managing medications, attending doctor's appointments, and monitoring for any new or worsening symptoms.  Today, many doctor's appointments can be handled with a video call, which will make it easier for everyone, so you do not always have to take the dementia patient to the doctor's office.  See if you can schedule some of your family member's appointments so they are handled with a video call. This was life saving for me!

Conclusion

Living with and caring for someone with dementia is a profoundly life-changing experience that requires compassion, support and a lot of hard work.  Remember, it's also important to take care of yourself. Seek support from community resources, healthcare professionals, and support groups.  Accept any help that is offered.  You need breaks, too!

Don't forget to learn more after you read this brief article.  I highly recommend you use this Amazon link to check out: "The Dementia Caregiver's Survival Guide." (Ad). It has a 5-Star rating and you will find yourself referring to it over and over again. 

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References

World Health Organization. (2023). Dementia. 

Alzheimer's Association. (2023). What Is Dementia? 

Boss, P. (2006). Loss, Trauma, and Resilience: Therapeutic Work With Ambiguous Loss. W.W. Norton & Company.

Alzheimer's Association. (2023). Support & Care. 

National Institute on Aging. (2023). Caring for a Person With Alzheimer's Disease.