Dementia: How to Cope With Challenges as a Family

A dementia diagnosis is a life-changing event, not only for the patient, but also for friends and family. Caregivers must quickly learn the effects the diagnosis will have on all aspects of their and their loved one’s lives. Tara O’Rourke, LNHA, MA, administrator at ProMedica Goerlich Center, which specializes in treating patients with Alzheimer’s and dementia, answers some common questions about dementia.

My loved one was just diagnosed with dementia. What kinds of challenges will this pose for them as the disease progresses?

Since Alzheimer’s disease and other dementias are progressive disorders, the needs of someone diagnosed with this illness will continue to change as the disease progresses. In the early stages, it is important to plan ahead for legal, financial and healthcare matters such as Advanced Directives.  This is the time to have open and honest communication as a family regarding future choices that may prove difficult.

A loved one with dementia will need additional help and support as the dementia progresses into the moderate stages. As the disease progresses, it robs the individual of the ability to live alone and care for him or herself. A family may need to seek support from healthcare providers, such as home health, long-term care or hospice.

Are there any nutritional challenges that accompany dementia?

There can be a variety of nutritional challenges for someone with memory loss. In the early stages of dementia, a person may forget to eat, may forget how to prepare meals safely, or may try to consume spoiled food, causing safety issues. Additional safety concerns may also arise from the use of cooking equipment, such as a stove that is forgotten and left on. In the moderate stages of the illness, sometimes a person with memory loss is more successful in consuming finger foods that can be picked up as they may struggle to use utensils appropriately. In the later stages of the illness, a person may need softer food if swallowing issues arise and may also become dependent on someone else to feed him or her. A living will can be executed to communicate decisions regarding artificial nutrition and hydration, should these issues arise in the future.

When is it no longer safe for my loved one to live alone?

Several different factors can contribute to a person no longer being safe living alone. Generally, many people can continue to live in their own home through the early stages of memory loss, provided they have support from family, friends and caregivers with meal preparation and medications. As they progress into the middle stages of memory loss, they may become increasingly dependent on others and may be fearful to be alone. Family members may also fear for their loved one’s safety alone in the home if the person with memory loss experiences falls, has unstable medical conditions (uncontrolled diabetes, for instance), attempts to wander from the home alone, or makes poor safety decisions (such as leaving the stove on or turning the heat up to a dangerous temperature). Often in the late stages of dementia, full hands-on care is necessary and this can be difficult to provide in the home. Families should work together and with their physician to discuss such issues and determine support services to provide greater supervision in the home or alternate living arrangements.

When is it no longer safe for someone with dementia to drive?

This is one of the most common questions and one of the most difficult to address. Many families are reluctant to confront their loved one with memory loss and take their keys, yet many individuals with memory loss are unaware of their deficits and insist on continuing to drive. This, of course, can pose a great risk to the person with memory loss as well as others.

According to the American Medical Association Physician’s Guide to Assessing and Counseling Older Drivers, driving in the moderate stages of memory loss can pose a great safety threat. The current best practice model to assess driving ability is a combination of working memory and cognitive function testing combined with an on-the-road driving assessment. ProMedica Flower Hospital’s Total Rehab program [http://www.promedica.org/flowerservices] currently offers this driving assessment. It is important to note, though, that continued assessment is necessary as the disease progresses and a person’s abilities continue to change. Your loved one’s physician can assist in recommending a course of action.

Should I be worried about them taking their medications properly?

Managing medications and taking them correctly is a common concern in the early stages of memory loss. It is often one of the first signs of cognitive decline, as it can be quite difficult for individuals taking many medications. It continues to be increasingly difficult as a person progresses further in their memory loss. This is definitely an area of concern and families or healthcare providers often need to step in to provide support and to maintain safety.

My loved one has always been very independent, and talking to them about assisted living or giving up their car keys could be met with resistance. How can I soften the message?

Such conversations can be very difficult. Depending on whether or not the person with memory loss recognizes their limitations, this conversation can either be well received or can cause hurt feelings and distrust. Often, the person with memory loss forgets their limitations or denies them altogether. It is especially important, though, to intervene and provide a safe living environment or to take away the keys if safety is an issue. An intervention-based approach with various family members participating and speaking from a place of loving care and concern is best. The conversation may need to happen more than once and the person with memory loss needs to feel supported through these changes. For instance, if driving privileges are taken away, family members must be available to assist with driving tasks. Likewise, if an alternate living arrangement is necessary, families should work together and involve the person with memory loss, if possible, to make decisions. By offering solutions and support, the impact from such difficult conversations can be softened.

I’ve noticed my loved one’s memory is getting worse. Are there any activities I can do with them to help spark their memory?

There are many things a person can do to proactively slow the progression of memory loss. Healthy lifestyle choices that are good for the heart and the body are also good for the brain. In addition, cognitive stimulation and socialization are great for keeping the brain active. Continuing to engage in cognitive activities that one has enjoyed in the past, such as crossword puzzles, trivia, card games, etc., can be very good as well as exploring some of the online brain training programs that are becoming so popular these days. The important thing is to find something your loved one enjoys and help them remember to stick with it for best results.

What is the best way to comfort someone who has a memory lapse?

The most important thing to remember when caring for someone with dementia is that we never want to argue with them. Their experiences are their reality and we need to enter their reality for best results, rather than trying to orient them to our reality. It is important to validate a person’s feelings and help them feel supported, comforted and reassured.

Caring for someone with dementia can become stressful and, at times, frustrating. What tips do you have for decompressing and taking time for myself?

The most important thing to remember when you are a caregiver, yet the hardest thing to do many times, is to ask for help. Caring for someone with dementia can be very challenging; it is often 24 hours per day, and many times it can be a stressful, thankless job. When others offer help or support, say YES! Take advantage of respite care programs, talk to your physician about support options, connect with your local Alzheimer’s Association, or seek other local resources that can offer support for both you and your loved one.

What impact will my loved one’s diagnosis have on their finances? When is it time to start talking about power of attorney and a living will?

It is never too early to start having conversations with your loved ones about legal and financial matters. It is really imperative to start such conversations while your loved one with memory loss can still understand such concepts and make appropriate decisions. As people with dementia progress into the moderate and late stages of the disease, they will require 24-hour care either in the home or at a care facility. This care can be very difficult for family members to provide, so most families do seek the support of a healthcare provider, which can be very costly. Health insurance generally does not cover custodial care in the home or in a care facility, so it is helpful to plan for such expenses.

Can other conditions impact how the disease progresses? Can the disease impact other conditions?

Pain and depression can both exacerbate underlying dementia and cause a person’s confusion to be greater. It is important to effectively treat both pain and depression. Dementia, in turn, can impact other disease processes as it can cause difficulty in maintaining medication and treatment compliance. For instance, if a person with dementia also has diabetes and is dependent on insulin, their confusion might impact their ability to eat properly, assess their blood sugars, and take their medication properly.

Is there anything else important to add or to keep in mind?

It is important to remember that since dementia is a progressive disorder, a person diagnosed with it will continue to need increasing support. It is important to educate yourself, seek support, and see the positive side of the situation. As a person forgets things in the short-term, they often have a stronger long-term memory. This might enable a family to have positive, insightful conversations about the person’s past and document their loved one’s personal history. These types of memories are often fondly recalled after the person with memory loss has passed away. It is important to remember that this person is still a whole person, even though their memory is failing, and to continue to see them as an individual, rather than a disease.

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