There are many different causes of dementia—a general name for memory loss and cognitive impairment. Alzheimer’s is the most well known and the most common. About 50% of people with dementia have Alzheimer’s. Another 10% to 20% have what’s called “mixed dementia,” which is Alzheimer’s and another type, such as vascular (stroke) dementia or dementia from Parkinson’s disease.
Most forms of dementia are progressive, meaning they get worse over time. Since Alzheimer’s is the most common, the stages of dementia are often described based on this disease. Dementia from other causes may have different symptoms or the same symptoms, but occurring earlier or later. But generally, they follow a similar pattern of decline, with similar experiences for the person with the disease. And similar demands on the family caregivers.
The early stage of dementia often involves the loss of logical thinking and short-term memories. This is when the person with the disease and the family start to suspect that there may be a problem.
There is no cure yet for Alzheimer’s nor for most of the other dementias. But early identification allows for medication treatments that have been shown to ease the symptoms or even slow the progression. It also allows for the option to participate in clinical trials.
If you would like more information about testing for memory loss as well as support during the early stage of dementia, give us a call at 301-593-5285.
The early stage of Alzheimer’s lasts about two years on average. The beginnings are subtle. Only family members may notice. But over time, others will observe things that just don’t match up. Early-stage symptoms include the following:
Trouble remembering words, names, appointments, or recent conversations
Difficulty learning new tasks or remembering introductions to new people
Problems with numbers, balancing the checkbook, keeping track of bills
Trouble taking medications on time and keeping prescriptions refilled
Losing or misplacing objects, with no recall where they were set down
Challenges with planning, organization, and multistep processes. Even if they are familiar, such as cooking a favorite recipe
These may become more pronounced over time. Toward the end of the early stage, you may notice:
Repeated questions (not remembering the answer that was given ten minutes before, when they first asked, “When are we going to the doctor?”)
Repeated stories (not remembering they just told you the same story)
Effects on planning and thinking capabilities, along with spatial perception, may result in unsafe driving. (Weaving within a lane. Getting lost or disoriented in familiar territory. Driving too slow or too fast. Turning the wrong way on a one-way street. Two or more traffic or parking tickets. Dents in the car. Two or more minor or major accidents.)
The experience of those in the early stage of dementia
Some people in the early stages of dementia feel confused and depressed. They can tell their memory is not what it used to be. They notice their struggle or the easy overwhelm with tasks that used to be fairly routine. They perceive the frustration of family members. They aren’t forgetting on purpose. They know it’s hard. And they know they are losing a lot.
Other people with dementia are not aware of their deficit. When events don’t quite match up to what they are expecting—they can’t find an object that is not in its usual place—they assume it’s someone else’s fault. (We don’t like to think we misplaced an item and can’t remember where we put it.)
In a sort of poetic sense, the early stage can be called the stage of mental changes. Challenges to logical and abstract thinking are most apparent. From a cycle-of-life perspective, the damage to the brain at this stage is like “unlearning” what we learned to master as adults: Our planning and executive functions.
Emotions. A diagnosis might help relieve the bewilderment of “what’s happening?” But it also brings with it many emotions. Your loved one will start to fully take in the consequences and likely progression of the disease. Grief, anger, denial, hope, and despair are very common emotional reactions. It’s perfectly normal and appropriate to feel these emotions, and deeply. While eventual acceptance is optimal, it cannot be rushed. That said, many people become bogged down, hopeless, and depressed. They can’t see a way forward to anything positive.
Depression is generally treatable! Some of your family member’s mental confusion may even be caused by depression and anxiety. The foggy thinking and distress may improve with antidepressants and talk therapy. People tend to move through the difficult emotions to acceptance much quicker if they accept help from the doctor, a counselor, and/or a dementia team. Concentrating on emotional health can help your relative come to realize they are more than their diagnosis.
A positive life is still possible. A diagnosis of dementia or mild cognitive impairment is not a jail sentence. There are ways to find joy and fulfillment for years to come. Pull out that bucket list! Activities that were being postponed for later should be scheduled now. What they have is the present. Make the most of it. Connect with family. Search out friends who can be supportive. Don’t take it personally if others drop away. Mostly they need education about the disease and how to respond to the changes.
Look for ways to modify past pleasures so your family member can still enjoy their favorite activities. (Quit keeping score when playing golf. Meet with friends outdoors instead of indoors where it’s difficult to concentrate on a conversation.) New friendships are also likely if you and your loved one reach out in an early-stage support group. It’s comforting and empowering for both of you to realize you are not alone with the challenges and emotions you are facing.
How family caregivers can help someone in the early stage of dementia
Supporting a family member with cognitive impairment is challenging, no matter the stage. In the early stage, you will likely be more of a “care partner.” Your relative will still have the ability to make decisions and live somewhat independently. It’s important to maximize their independence and control over their life for as long as is safely possible. Over the course of this stage there will be a lot to learn and do. Your guidance will help them live the best life they can.
Encourage a full medical assessment. Although Alzheimer’s is the most common cause of dementia, there are many others that display similar symptoms. Some are treatable because they aren’t Alzheimer’s at all (depression, for instance). Some require different approaches than those strategies that work for Alzheimer’s. A full medical exam will clarify the cause. The exam involves the following:
Medical history and physical exam. The doctor will ask about family history and your loved one’s own medical issues. The medical professional will also do an examination of heart, lungs, thyroid, and vision. Discussions will likely occur regarding diet, exercise, alcohol, smoking, and recreational drug use.
Labwork. Blood tests and urine tests will screen for issues of the liver, thyroid, diabetes, etc.
Brain scans. Scans identify the areas that are affected and whether the issue is due to blood restrictions (a past stroke or brain bleed) or a tumor or fluid on the brain.
Psychological tests. These tests can include anything from depression screening to memory tests. Puzzle activities and question-and-answer assessments provide a thorough picture of strengths and weaknesses.
A family caregiver may be asked to attend some of these sessions. Ideally, they answer questions privately in another room since the person with dementia often has no real awareness of their difficulties.
Help them accept the diagnosis. Many emotions are likely coming up for your loved one. You are going to have some strong feelings, too. Both of you need to validate these feelings. Suppressing them or saying, “cheer up, look on the bright side,” will just make your family member feel unacknowledged and less likely to share what’s going on inside. It’s worth it to spend some time discussing worst fears and what will be lost in terms of a future they had in mind for themselves. Mourning and grief are healthy.
You might want to encourage your family member to keep a journal to write down their feelings, fears, concerns, and questions they’d like to have answered. Invite them to share it with you or perhaps with their doctor or a counselor. (You might want to keep a similar journal for yourself. If appropriate, the two of you can share yours, too.)
The more the person you care for understands their condition (be it Alzheimer’s, Lewy body dementia, vascular dementia, etc.), the better they will be able to put things in perspective. You may need to lead the way by learning all that you can. Most people expect to be in a vegetative state in a few months. Not true! For most dementias, there are still many years of active and engaged living after an early-stage diagnosis.
Ultimately, acceptance will mean understanding that they are more than their diagnosis. Help your loved one to embrace what they can still do and activities that give them meaning. Focus on adjustments that can be made to address emerging challenges.
Also, that they are not alone. Many people feel the stigma of dementia and do not want others to know. Certainly, some friends and family members will be worried or upset to learn of the diagnosis. Usually they just need education to get past inaccurate ideas they have. But some friends will become distant. Don’t take it personally. It’s just that they aren’t sure how to respond or know what to do.
On the other hand, you may find that unexpected friends step forward and are very supportive. Your family member needs people besides you to talk to and share their worries with. That can be friends, a faith leader, a counselor, or someone knowledgeable about their condition.
Join an early-stage support group. There are online and in-person support groups for the early stage. They often include the person with dementia and their family caregivers. Some meetings involve activities with everyone together. Others separate out family caregivers from the person with dementia so each group can speak candidly.
It will be helpful to both of you to find others going through the same challenges. Dementia can be so isolating. It’s liberating to know you are not alone. The value—for both of you—of an early-stage support group cannot be overstated.
Weigh the pros and cons of treatment. Some treatments can slow the progression of the disease. A very few suggest the possibility of a cure (again, depending on the condition). Insurance coverage is sporadic, depending on the medication. All the treatments seem to be most effective if started during the early stage.
Other treatments are clinical trials (experiments with new drugs), with the long-term goal of finding a cure. If your loved one feels hopeless, a clinical trial may help them regain some hope and a sense of purpose.
Discuss all options with the doctor. At the least, there are usually lifestyle changes that can slow the progression.
Balancing independence and interdependence. People in the early stage often remark that they want to do things for themselves and remain as independent as possible. Check with your family member to find out how much they want you to do for them and how much they want to do for themselves. Even if they don’t do it as well or as quickly as you might, they often feel more respected for being given the chance to try, especially if there is no danger involved.
As time goes on, you may need to assume more of a guiding role and then eventually take over. For instance, in the beginning, they may want to still pay their bills or balance their checkbook. Perhaps you review the checks before they get sent out. Later, you might discuss what to pay, and you write the checks and they sign. Toward the end of the early stage, as signs of the middle stage start to emerge, you may take over bill paying altogether.
Plan for the future. Similarly, decisions about finances, medical care, and housing should be discussed now while your loved one still has the ability to express their preferences and make informed decisions. It’s often wise to work with an estate planning attorney to get the legal paperwork in order:
Advance directive (medical care)
Name a healthcare decision maker who will step in and work with the doctors on treatment, support services, and end-of life care for the months (or years) when your family member is unable to make decisions for themself.
Create a living will that discusses what treatments your relative does and doesn’t want near the end of their lives. Some people want to have every possible thing done to be kept alive. Others prefer few interventions and to die a natural, pain-free death. Your loved one will need to voice their preferences.
Financial decisions
Name a durable power of attorney who will step in to make financial decisions regarding bills, assets, investments, etc., when your relative can no longer do it on their own.
Create documents such as a will and a living trust that describe the disbursement of assets.
You will want to have important discussions about housing, transportation, and support services:
Do they want to remain at home to the very end? What are the likely costs of outside help that will probably become necessary at some point? Well-meaning family caregivers need breaks. They can’t sustainably provide the 24/7 assistance and supervision that becomes necessary during the later stages. Are there enough family resources to hire high quality, in-home care?
What about options such as memory care? These are special housing situations where staff are trained to assist people in the moderate and advanced stages of dementia. Because they work in shifts, your loved one will get fresh and professional support 24/7. The group setting provides important socialization and stimulating activities geared to your relative’s abilities. Plus, memory care shares the cost of staff across many residents and may work out to be less expensive than in-home care.
Consider driving alternatives. Depending on your family member’s level of impairment, they may still be okay to drive, at least for a while. Getting lost or having trouble judging distance are signs that the disease is progressing. By the end of the early stage, it will no longer be safe for your loved one to drive. You may or may not want to talk with them about that now. For yourself, think about alternatives so you are ready when that time comes.
Talk about changing roles. As mentioned earlier, family members are more like “care partners” in the beginning. You want to support their ability to remain independent. But over time, this will change.
Having open and honest conversations now will pave the way for a spirit of teamwork. This combined effort can carry on even as your loved one may not fully understand the details. While you can discuss it, talk about how best to give them assistance. They need to retain their respect and dignity even as you gradually do more and more for them.
If you are a spouse, you’ll want to share your fears, but also discuss what you can still do together. How will you approach this as a team? You likely have shared finances that are going to be affected. It’s wise to discuss your intimate relationship, as it will change over time. A counselor knowledgeable about dementia issues can be very supportive of both of you through this life challenge.
If you are an adult child, resist the temptation to think that “now they are the child and I am the parent.” Eventually, indeed, you may need to change their diapers in the final stage. But between now and then, they still have emotional memory and recognize that they are the parent. Any diminishment of respect or dignity, any bossing them around, will not be well received. Like a dance, you will need to learn when to follow and when to lead. And it will change over time, so you’ll have to stay flexible.
Help them enjoy what they can do now.
Take advantage of the present moment. Dementia may be likened to a “be here now” condition. All you have for sure is the present, so make the most of it. Travel or other “bucket list” activities should come to the forefront right away, before they become too challenging. There’s no time like the present!
Recreation. While strategy games and spirited conversation may have been sources of great joy in the past, they are more likely to get frustrating as the disease progresses. You may have noticed it already. Instead, look to activities that draw upon the body and emotions and rely less on mental sharpness or following multiple steps.
Spending time with grandchildren
Doing physical activities
Socializing perhaps in new ways or with new people
Spending time with a pet (unconditional love)
Singing or listening to music
Reduce stress and simplify. Too much noise, clutter, or pressure creates brain overload and easily brings up feelings of overwhelm and agitation. Avoid situations with lots of people, background noise, or a need to get things done quickly or in a particular way. Eating a picnic meal in a tranquil park, for instance, will be preferrable to quickly eating in a shopping mall food court or a formal dinner at an awards ceremony.
Think in terms of creating a daily routine. The less your loved one needs to think and remember—the more they can do as a habit—the more brain stamina they will have for addressing the challenges that inevitably arise. Have a morning routine, an afternoon routine, and an evening routine. This will provide comfort and a calming structure to daily life. Make sure there is ample time for unhurried rest, relaxation, and sleep. (The brain does a lot of important cleanup and restorative activities during sleep.)
Self-care for family caregivers of persons in the early stage of dementia
The early stage of dementia involves getting up to speed quickly. After a full evaluation, it may not be a surprise to you that your loved one has dementia. But the emotional reality can be big. And there will be a lot to learn about once you have a specific diagnosis. You will need to zoom ahead in many ways because your loved one will be turning to you for help and insights.
Getting a full medical evaluation. An early diagnosis will give you the longest runway you can get to make the adjustments you need to make. You may need to spearhead an evaluation with your relative’s doctor. The sooner you do, the sooner you can get your family member treatments that seem to be beneficial only if started in the early stage. You and your relative can also decide about clinical trials. Plus, this will give ample time for doing fun things like addressing those “bucket list” items. That rainy day you’ve been saving for? It’s here! This is the time to smell the roses and do all those fun ideas they have been saving for! Also, the earlier the diagnosis, the better for making plans while your loved one’s logical thinking abilities are relatively intact. Now is the time to make decisions about finances, advance care planning, and their preferred methods of support as the disease progresses.
Become informed about the disease. Whether the cause is vascular dementia, Alzheimer’s disease, Lewy body dementia, Parkinson’s, or any one of the many, many different causes, learn what is known. Give yourself an intellectual understanding of why the doctors are recommending what they are. This will help you ask clear questions. It will also help you clarify things with your loved one and educate other family and friends. (The more they can know about the disease, the less likely they are to pull away due to misinformation and stigma.)
Accepting the diagnosis. As with the person with dementia, your life is going to change radically over the next few years. If you are a spouse, there is likely a very different future ahead for you than the one you imagined. For family members, there will be greater demands for support than you may have envisioned. All family members are likely to experience many of the emotional swings that your relative is experiencing, simply from a different perspective. These are all normal reactions and can’t be hurried. You will do yourself a big favor to reach out and get support: From friends, clergy, a counselor, and other caregivers in the same situation. And be aware of depression. It will sap your energy. Talk to your doctor if you suspect you are getting bogged down in feeling hopeless. Most dementias are not curable. Depression often is!
Join an early-stage dementia support group. (This is different from “early onset,” which is for people who receive a dementia diagnosis before age sixty-five.) Often early-stage support groups will be sponsored by a hospital, a church, an adult day center, or a local chapter of the Alzheimer’s Association. (Even if the person you care for does not have Alzheimer’s, you can still benefit from their groups. They are very inclusive of other dementias.)
Support groups designed for the early stage usually have a format for learning and doing activities together as a group (family caregivers and the person with dementia). Then they split out sometime during the session so family caregivers can have time to talk by themselves. It’s also helpful for the people in the early stage to talk together without their family members so they can openly share their concerns. Or just be with others who have the same challenges and abilities. To socialize and feel normal. Not to be overstimulated or subjected to frustrated looks if they need to move more slowly or don’t understand what’s happening.
