First of all, it is important that the diagnosis be confirmed by a neurologist (doctor specializing in the brain, spinal cord and nerves), not just your general practitioner. Many people, including some family doctors, ask “Why does this matter when there is no known cure?”
There are three main reasons a neurologist should be involved:
The neurologist can more accurately rule out all other conditions that could be misinterpreted as dementia (depression, low B12, thyroid insufficiency, other medications etc. to name a few).
The specific symptoms the patient has displayed over time as well as testing results from tools like the MMSE (mini-mental status exam) and others may reveal a specific type of dementia, which in some cases might be treated differently than the average dementia.
The neurologist keeps a watchful eye during the course of the dementia allowing for adjustment of drugs to increase the quality of life of the person with dementia as well as the quality of life of the caregiver. Not all general practitioners would have the expertise to manage the dementia as the neurologist would. If you need to see a neurologist in your area, look for a neurologist involved in memory care.
There are a number of steps to take once the dementia is confirmed by a neurologist. The steps don’t have to be done exactly in this order, but if you address them you will be in much better shape to follow your dementia journey.
A. Have A Family Meeting
It is important to get together with all family who might be involved with the future care of the person with dementia. Caregiving for someone with dementia is unlike anything you have ever attempted. The caregiver will need support from friends and family for the entire journey, and no one can tell how long that journey will be. So everyone in the family needs to be “on the same page”.
Someone needs to be designated as the main caregiver. Many times it is an obvious choice like the spouse, or an adult child. The person with dementia should be included in this first meeting so they can voice their desires. That way they feel that their wants/needs are heard and are more likely to go along with the decisions that are made as a whole.
At this meeting you don’t have to know all the points to be discussed, but who will eventually be the main caregiver should be discussed, who can help out to relieve the caregiver, whether it will be a week here or there or a weekend a month of relief for the caregiver and by whom. The financial status of the person with the disease is also an important topic so the family knows whether they can hire help to supplement the care. Does the person have money to pay for a nursing home placement should one be needed down the road? The family needs to know how they will support the family in the future. Not everyone in the family needs to offer the same type of help. People have constraints by their jobs, children, physical limitations, etc., but they can all offer something! Whether it be giving time, money, performing certain jobs, researching information, or searching for helpful agencies for the ones involved is what is important.
Whether a virtual meeting, or hopefully an in-person meeting, the family should continue to meet and update each other through the progress of the disease and the changing needs of the person with dementia and the caregiver. It is also important to keep family updated not only with changes in behavior but things that the caregiver learns in dealing with the person with dementia that are helpful, so that when others step in to help caregiving they are up to date on things that make the day go better vs. actions that don’t. This can be done by a monthly newsletter by computer.
B. Take An Introductory Course Together
The caregiver and care partner can sign up for the introductory 8-week course for the newly diagnosed. This course gives them a knowledge base about dementia, encourages them to talk about having dementia and disclosing that fact to others in their friendship circle. It also discusses things they should take care of legally including health care proxy, powers of attorney, and wills, etc. The course is offered by the Alzheimer’s Association near where you live. You can call 1-800-272-3900 to find out the Alzheimer’s Association nearest you, or go to alz.org and put in your zip code to find the location.
C. Join A Support Group
There are support groups for newly diagnosed folks as well as separate support groups for caregivers. These are so important because it helps caregivers and those diagnosed to feel not so alone, to learn more about the disease, and how to deal with the behaviors that develop as the dementia runs its course. After the beginning introductory course the caregiver groups are held separately from the care partner groups. That way each person can talk openly and truthfully without hurting their loved-ones.
D. Choose A Few Books To Read About Dementia
There are two types of books from which to choose: the first is a book about dementia and its clinical presentation from beginning to end, the second is a personal account written by a caregiver. These are suggested for the caregiver, not the person with dementia. Both are important because the clinical one provides knowledge, the second provides emotional identification with the writer and the realization that the caregiver is not alone. Living with and caring for someone with dementia requires a completely new skill set to be learned a little at a time. It also helps you to feel validated for your feelings of frustration, worry, or anger. One thing to keep in mind is that no person’s course of the dementia is exactly like another. It depends on what areas of the brain are being damaged, what symptoms or behaviors are elicited.
E. Get Your Legal House In Order
Make sure the person diagnosed with dementia has a health care proxy, powers of attorney, and a will. Also make sure that the beneficiaries of funds and insurance vehicles are up to date. It is important to have these things drawn up while the person is still able to understand the meaning of the documents so their requests can be stated and honored. The caregiver should have the same documents as well so that if something happens to the caregiver, the proper actions can be taken. There are times when the role of caregiver takes it’s toll on their health, and they die before the person with dementia.
If these legal items need to be drawn up, make sure that you choose an elder law attorney. They know the pitfalls that can wreak havoc if the documents are not done properly, or the circumstances become difficult. You want to protect as much of the wealth of the person so that you can use the money to care for the people involved, rather than in legal proceedings or taxes.
F. Order A Safe Return Bracelet
Through the Alzheimer’s Association you can register your loved-one in the Safe Return Program. They document the patient’s name, where they live, who takes care of them, and contact phone numbers. They issue a bracelet or necklace (the bracelet is harder to remove) with Safe Return and a phone number of the registry on the bracelet. Anyone finding the person wearing the bracelet calls this number and can find out where they belong and whom to call. The caregiver can also have one so that if they are involved in a car accident or health concern, anyone who calls the registry will find out they are a caregiver and can reach an alternate person to care for the person with dementia.
This registry is great because if the person with dementia wanders or gets separated in a crowd, someone finding the person can find out where they belong.
G. Fine Tune A Family Care Plan
This is not a one time event. As the person with dementia changes, so should the care plan. As the person gets farther into the disease, extended family need to give added support to the caregiver and care partner so that the caregiver can maintain a healthy attitude and stress relief. Maybe it’s coming and spending a week with your loved-one while the caregiver takes a vacation; hiring a companion for a number of hours a week; perhaps it is hiring out more jobs so the person doesn’t have to worry about the household, or paying for meals to be delivered.
Family members owe it to the caregiver to be there as things change and the caregiving job gets harder and harder. The more the family learns about the disease and how to circumvent possible adverse behaviors, the better off the family will be as a unit. The caregiver as well needs to learn to take help when it is offered, and to suggest ways to help them cope. That is not always an easy step, but it is well worth it once you give in to the fact that you can’t do it all!
H. Practice Disclosing The Diagnosis To Friends, Family, And Others
The more open you are in telling others that you need help with things when you are out, the more willing people will be to help. In my parents’ generation and in the early part of mine, dementia was a taboo subject. As the baby boomers come of age, however, more of us are going to be diagnosed. During the progression of dementia there are many opportunities for the person diagnosed to act as independently as possible. But if we learn to ask for help, there are plenty of community members willing to help if you disclose your dementia.
During my husband’s course I can count at least 6 times that my husband needed help: couldn’t find his car at the mall, got lost going to the recreation center via the canal path, couldn’t find his clothes at the recreation center, got lost walking in the neighborhood, and got lost on his bike. People helped him each time with a smile! Early in the dementia sometimes you have to let those diagnosed have their independence, but as incidents increase, then the independence has to be lessened.
I. Participate In Studies
Participating in dementia studies allows the person diagnosed to feel that they are doing something positive by helping clinicians to find a drug that helps stop the progression of the disease, a better way for diagnosis, or even a cure. While the person is involved in a study (usually lasting 18 months or so) they are assessed more often than those who are not, meaning that they get the best care possible!
J. Stay Active And Engaged
The person with dementia increasingly has trouble initiating activities. This means that they don’t help the caregiver by suggesting things they would like to do. That doesn’t mean they wouldn’t enjoy the activities, it just means they aren’t capable of coming up with ideas. Nevertheless, it is important to keep them active.
Physically, if you both can walk or exercise together, that will help as well. My husband always used to say that if he had “brain fade” he would suggest going to lift weights or do some activity that raised his heart rate. It helped relieve and clear his brain so that he felt much better afterward. It will also help them to sleep better!
K. Establish A Routine For Each Day
In a world where they can’t trust their brain to make sense of their surroundings, if there is a reliable order to their day it becomes a feeling of comfort and safety.
L. Explore The Resources In Your Community
You want to do this before you need the resource, not when you are overwhelmed and need help right away. You need to pursue avenues for help when you have the mental peace to properly assess the various resources out there. The Alzheimer’s Association offers educational opportunities, support groups, counseling, social opportunities and they also partner with Lifespan to form the Finger Lakes Caregivers Institute (for Rochester NY area folks) which also offers courses, education, and counseling in different areas.
You’ll want to look at some possibilities for day care for seniors, and assisted living vs. some nursing home options. To do this way beforehand gives you an idea of what is out there and what it costs, and what you can afford. If you feel uncomfortable doing this by yourself, partner with another caregiver from your support group and do it together!
In the latter stages of the disease you may want to send some applications for nursing home placement to your favorite facilities, knowing that beds are hard to come by and that if you are not ready for a placement when an opening happens, you can refuse at least once and still be in the cue. In order to do this a you must have a Patient Review Instrument (PRI) that assesses the activities of daily living and whether your loved one meets the requirements for assisted living or a nursing home. PRI providers are found online.
M. Take Vacations While Your Loved One Can Still Adjust To Change
Do the important things on your bucket list. As you get further into the disease you will want to reign in on things that are too different than your daily life. Traveling to foreign places can be very upsetting for dementia folks when they have trouble dealing with their regular daily life. At that point, travel should be ceased and focus on visiting local places for maximum enjoyment. Day trips are easier, and have a shorter recoup time after they are over. (All trips require so much mental focusing that the person with dementia needs recoup time to rest their brain afterwards).
N. Be Cognizant Of Signs Of Depression
We must be diligent in recognizing signs of depression not only in the person with dementia, but the caregiver as well. It is common for depression to be seen in both populations and the presence of depression will cause a marked decline in the ability to function properly and the ability to enjoy each day. Signs of depression are changes in sleep patterns, loss of interest in activities, more trouble concentrating, irritability, withdrawal from social situations, and a feeling of hopelessness. These signs are hard to interpret as depression because dementia can increase sleepiness as it progresses because the person increasingly finds it difficult to make sense of his world and so will withdraw to rest the brain by sleeping. The other symptoms listed also happen with increasing dementia. The neurologist and general practicioner are the best persons to determine whether a drug should be tried to enhance mood. Shortly after diagnosis if marked changes are occuring, one should look at the possibility of depression as being present. Usually there is not a marked drop in abilities/behaviors until late in the disease from one day to the next, unless something is medically wrong such as a UTI, lung infection, etc.
O. Termination of Driving
Eventually the act of driving will have to be stopped. If you are lucky, the person with the disease will give it up willingly when diagnosed. The neurologist will usually take on the role of being the “bad guy” and will tell the person diagnosed when it is time to stop driving. He/she can tell this by the feedback from the caregiver as well as the person’s reaction/score on the MMSE test that is given every time they are seen. If they refuse to stop, you can have them tested by an agency that does driver evaluations (besides the Motor Vehicle Bureau). If they don’t pass, the person is more likely to believe the agency rather than the caregiver asking them to stop. The agency will notify the Motor Vehicles Bureau if they fail, so their license will be revoked.
P. Make Humor A Part Of Every Day
Humor is a great uplifting emotion. Besides making you feel better, humor can relieve stress. It is a good tool to use when you want to overcome awkwardness during disagreements. It can also help to bring you closer to your loved-one if you enjoy humor together and can put things into perspective, especially for the caregiver. Caregivers learn early that you are the one that has to change because your loved-one increasingly cannot change. You are the one who has to let go of things that maybe were important to you, but now seem less so given a new perspective. Make a joke about arguing that doesn’t place the care partner as the object. “Why do I have all this grey hair, Bob? I don’t know, luckily I like grey hair! ” Then give him a hug! Make sure you say it with a calm voice and a warm smile. Being playful and silly can be a way to relax a situation. Share simple jokes that your loved one can understand.
Now, reading all of the above may send you in a tailspin initially, but take a deep breath! Create a “To Do” list and tick them off one by one. They all don’t need to be done immediately, but if you get them all done in the first 6 months to a year, you will be in much better shape going forward! Good luck on your journey! It can be a great learning experience filled with moments of love and joy that that you will remember forever.