Living with a person with dementia can be an emotional rollercoaster. One minute, the person can be happy, the next they might be tearful, depressed or angry.
Perhaps you've heard the phrases, "What you don't know can't hurt you" or "Ignorance is bliss." While that may be true some of the time, it's often not accurate when coping with dementia. Having worked with thousands of people impacted by Alzheimer's or another type of dementia, I can testify to the fact that there are definitely things that, as caregivers, they wish they would have known earlier about dementia.
Here they are:
1. Arguing With Someone Who Has Dementia Isn't Worth It
It's so easy to become frustrated and angry with someone who has dementia, and then begin to argue with him to convince him of how he's wrong. This tendency is especially common when this person is a family member or close friend. Instead, remember that dementia actually changes brain function, structure, and ability. You will rarely win an argument in dementia; rather, you will almost always increase the frustration levels of both of you. Spending time being angry and arguing in dementia is just not worth it.
2. Ignoring the Symptoms Won't Make Them Go Away
It's not uncommon to spend valuable time in the early stages and symptoms of dementia hoping that the symptoms will just go away, or trying to convince yourself that it is just a phase or that you're overreacting. This attempt to cope by denial of the problem may make things better for you in the short term of today, but it can delay the diagnosis of other conditions that look like dementia but are treatable, as well as delay diagnosis and treatment of true dementia. Instead, remember that while it can be anxiety-provoking to schedule that appointment with the doctor, it can also be helpful to know what you're facing. Even having your worries confirmed by getting a diagnosis of dementia can actually be a good thing, since there are many benefits to early detection, including medications that are often more effective in the early stages.
3. Too Many Medications Can Make People Feel and Act More Confused
While medications are, of course, prescribed to help people, too many drugs can hurt people instead, causing disorientation and memory loss. Oftentimes, a medication might be ordered for someone with the intention of treating something briefly and then be continued unintentionally for months or years without a need. Instead, when you go to the doctor, be sure to bring in a list of all of the medications that your loved one is taking and ask if each one is still needed. Include all vitamins and supplements since some of them can affect how medications work, or they can interact with the chemicals in the medications. Side effects of certain medications are sometimes significant and can interfere with cognitive functioning. It's worth asking for a thorough review of all of the medications to ensure that they're truly helping, and not hurting, your loved one.
4. Validation Therapy Can Help Us Respond Gently
People living with dementia often experience a different reality than we do. They may call out repeatedly for their mother or insist that they have to go to work, even though they've been retired for many years. Instead of being irritated and reminding your loved one of her age, the fact that her mother passed away decades ago or that she hasn't worked in 20 years, try taking five minutes to ask her to tell you about her mother or about her job. These are examples of using validation therapy, and using this technique can often improve the day for both of you. The ideas behind validation therapy help us to remember to adjust our focus to see things their way, rather than try unsuccessfully to have them see it from our perspective.
5. It's Never Too Late to Work on Improving Brain Health
Sometimes, people feel that after a love one receives a diagnosis of dementia, it's too late to do anything about it. Part of that response may be related to the normal grieving process after a diagnosis, but many caregivers have expressed that they really didn't know that brain health strategies can truly make a difference in functioning, whether cognition is normal or already declining. Instead, remember that while true dementia won't go away and generally is progressive, there are still a lot of strategies that can be used to maintain and even improve brain health and functioning for a time in dementia. Physical exercise, mental activity, and meaningful activities can go a long way toward maintaining functioning and providing purpose in daily life.
6. Sharing Your Struggles and Receiving Help Is Important
Millions of caregivers make every effort to do the task of caregiving well, and some end up doing it mostly alone. These caregivers often have no idea how exhausted there are, and if they do, they may feel like their fatigue doesn't matter anyway because they have a job to do.
Instead of barely hanging on, day after day, seek out home health care services, adult day care facilities, respite care, and support and encouragement groups for caregivers. These resources for dementia care can help you to be a better caregiver by refilling your cup of available energy. Caregivers who have finally accessed some support look back and say how very helpful this was to maintaining their own physical and emotional health through the process.
7. Choose One Small Thing to Do for Yourself
The risk of caregiver burnout is real. Caregivers don't need to feel guilty or frustrated because they don't have time or energy to exercise, smile, eat right, and get lots of sleep. Most caregivers are well aware these are things they should do but just don't have the time. The last thing they need is another list of things they should be doing. Instead, what caregivers need to remember is that doing even one little thing for themselves is important and beneficial. You may not have time to do the big things, but finding little ways to refill your tank of caregiver energy is critically important. Practical ideas from dementia caregivers who have been there include a 30 minute visit from a friend, 20 minutes of quiet time where you read a religious passage or listen to your favorite music, 10 minutes to drink your favorite flavored coffee, five minutes of locking yourself in your room to physically stretch your body or call a family member who will understand, and 10 seconds of taking a deep, deep breath and let it out slowly.
8. Pick and Choose Your Priorities, and Let the Rest Go
Some people have said that dementia picks and chooses its own battles. However, others have shared that initially, they tried to "do everything right," but as time went on, they learned that letting go of some of these pressures and expectations saved their own sanity and reduced their frustration. Instead of focusing on meeting your own expectations and that of those around you, change your focus to what's important at the moment. You will rarely go wrong if you ask yourself if the momentary challenge will be important in a month from now, or not, and proceed accordingly.
9. Have the Difficult Conversations About Medical Decisions and Choices
It can, understandably, be very hard to think about an uncertain future after a dementia diagnosis. You may need some time to absorb and process the information. However, instead of avoiding the uncomfortable conversation about medical decisions and power of attorney documents, take the time to discuss these important choices. Have that talk with your loved one who has dementia sooner rather than later (or never). Why? Not having to guess about medical decisions and personal preferences can afford you with much more peace of mind, knowing that you are honoring her choices.
10. Remember That He Really Can't Control His Behavior
When your family member or friend has dementia, it's tempting to believe that he's really not that bad off. This can be a protective tendency so that you don't have to directly face the changes that dementia is making in your loved one's life. Sometimes, caregivers would almost prefer to believe that a loved one is being stubborn, rather than the fact that he has dementia. The problem with that belief is that then, it's very easy to feel that he's choosing to dig his heels in and just being difficult. You may feel like he has "selective memory problems" or that he's just trying to provoke you or make your day difficult by not getting dressed to go to his doctor's appointment, for example. Instead, remind yourself that dementia can affect personality, behavior, decision-making and judgment. He's not just being stubborn or manipulative; he also has a disease that can sometimes control his behavior and emotions. This perspective can make it feel a little less personal when the day is not going well.
11. 20 Minutes Later Can Feel Like a Whole New Day
Sometimes, loved ones with dementia can become anxious, agitated, and combative while you're helping them with their activities of daily living. For example, perhaps you're trying to encourage your mother to brush her teeth and she's pushing you away and yelling at you. It's just not going to happen right now. Instead of increasing your demands about brushing her teeth, try giving her (and yourself, if necessary) a few minutes to calm down. Ensure her safety and go to a different room for 20 minutes. You might find out that when you return and turn on her favorite music, the task that she was so adamantly opposed to earlier is now much easier and not a big deal. While this won't always work, it often does, and it's definitely worth a try.
12. Quality of Life Is Not Impossible in Dementia
Coping with a diagnosis of dementia is often not easy. There are losses to grieve, changes to make and many things to learn. However, you don't need to fall for the lie that life will always be terrible with dementia. This is just not true. Instead, listen to others who've been there, who acknowledge the challenges and don't deny the pain, but who also strive to continue to enjoy life. According to many people who are living with dementia, there are ways to still enjoy life, to still have a high quality of life, despite their challenges. Take hope from their words when they say that they still enjoy socialization with friends, good food, pet therapy and laughter.
A Final Word
As a family member and caregiver for someone living with dementia, you may feel like your hands are full, and they very likely are. We applaud your efforts as a caregiver, and we encourage you to choose even just one of these "words from the wise" to remember as you go about your day. Our hope is not to provide a list of overwhelming directions, but rather to share the hard-earned wisdom from those who've been there, and to spare you, if possible, from later saying, "If only I had known."
For more information call Memory Matters Utah/Nevada at 435-319-0407. Memory Matters is a 501(C)(3) non-profit organization providing services in southern Utah and Mesquite, Nevada.