First things to do when your loved one is diagnosed

/Home/Caregiving and Alzheimer's/Caregiving for Different Alzheimer's Stages/1. Caregiving First Steps

Your loved one has just been diagnosed with Alzheimer's. What on earth do you do now?

The first thing to do is ... breathe. Take some time to adjust. Don't let the stress make you sick!

Even if your loved one has Alzheimer's, it may progress very, very slowly. You may have lots of good years ahead with him/her. So one of the things you'll want to think about is ... what do you want to do now, within the next few months/years, while you and your loved one can still enjoy your time together? For example, if the two of you like to travel, you might have some wonderful times ahead if you plan your trips properly.

When you have recovered from the shock and have the strength, work on the following issues:


>> GETTING A DIAGNOSIS

It is very, very important that you get a good diagnosis for your loved one. That isn't always the easiest thing to do! The most qualified doctors usually work with a so-called "memory disorder" or "memory assessment" clinic, or with an "Alzheimer's disease research center". Partial lists of these can be found at:

http://alzheimers.boomja.com/Locating-Clinics-that-Specialize-in-Dementias-59750.html

and I'm working on an updated list of memory clinics, organized by city. (If any of you have recommendations about memory clinics to include, please let me know!)

Bare minimum, find a neurologist, geriatrician, neuropsychologist, or geriatric psychiatrist who devotes a large part of his practice to the diagnosis and care of dementia patients. Most neurologists specialize, and those who focus on movement disorders (such as epilepsy) or migraines may not know nearly as much about diagnosing dementias as you might think.

To find a specialist, if you can't find a memory clinic or research center near you, ask for references from your primary physician or from friends who have dealt with a similar situation. Ask the nearest university or medical center if it has memory specialists. Contact your local chapter of the Alzheimer's Association and ask them. They can give you lists of doctors, but are not allowed to make recommendations, so do your homework! You can find contact information for your local chapter at:

http://www.alz.org/apps/findus.asp

The reasons a sound diagnosis is important: (1) There are many disorders that can cause dementia symptoms. Some of these are actually treatable, if diagnosed and treated promptly. So get a good diagnosis, and get it soon! (2) The medicines that may be useful depend on the disorder causing the dementia symptoms. Some medicines that are commonly prescribed for Alzheimer's may be contraindicated for other dementia syndromes. (3) The diagnosis may affect your loved one's ability to access some financial support programs.

If you're not comfortable that your loved one has gotten a good diagnosis, consider seeking a second opinion. Nowadays, Alzheimer's can be diagnosed with 95% accuracy ... by a very highly qualified team. Many different disorders can cause similar symptoms, and they can be very difficult to tell apart. We're only beginning to learn about them.


>> FINANCES

Sometimes, our Alzheimer's loved ones can continue to work, especially if they receive support from their employers. Carefully think through whether, when, and how to approach Human Resources at his place of employment, to find out what company programs may be suitable when the time comes for your loved one to leave. Because sooner or later, your loved one's disabilities will become to great for him to continue to be employed. Can your loved one get a pension? Disability? File for Social Security Disability (SSDI) or Social Security supplemental income?

There are many Federal, state, and local government support programs for which your loved one may be eligible. The problem is finding them! Tools to simplify this task can be found at:

http://alzheimers.boomja.com/Finding-Financial-Assistance-27304.html

Don't overlook support from the VA if your loved one is a spouse or surviving spouse of a veteran!

If your loved one doesn't already have long-term care insurance, it will be impossible to purchase once a diagnosis of dementia has been made. If you suspect Alzheimer's but your loved one has not yet been diagnosed, look into getting long-term care insurance right away!

If you are thinking about quitting your own job in order to care for your loved one, the Women's Institute for a Secure Retirement (WISER) has prepared a booklet with excellent advice, tips, and links to other resources. It's also available at http://alzheimers.boomja.com/Finding-Financial-Assistance-27304.html.


>> LEGAL PAPERWORK

Find a good elder law attorney, preferably one certified in estate planning and trusts, who has lots of experience dealing with Medicaid and other Government programs for which dementia patients may qualify. (One place to start looking is: http://www.nelf.org/findcela.asp ) Your loved one will need to get a number of documents in place if he doesn't already have them, or updated if he does, such as Durable Power of Attorney (DPOA) for you or another trusted family member, friend, or professional, so you can legally handle his affairs when he begins to have too much trouble himself; a Durable Power of Attorney for Healthcare (if this is needed where you live); wills or a trust, things of that nature. Explore with the attorney what needs to be done to protect your loved one's assets while still keeping your loved one eligible for Government support programs.

One of the earliest symptoms of Alzheimer's may be the inability to handle finances, keep a checkbook, and remember to pay bills. Look into your loved one's financial status as soon as possible, and be prepared to discuss it with the attorney.

Medical expenses for your loved one may become exorbitant. Sooner or later, you may have to rely on Medicaid to pay for his care. The Medicaid laws are many and complex, and while some of them apply to every state, others of them vary depending on where you live. They also have a nasty habit of changing the rules frequently. The best place I've seen for explaining all of this in simple terms is two articles from elderlawanswers.com:

http://www.elderlawanswers.com/elder_info/elder_article.asp?id=701
http://www.elderlawanswers.com/elder_info/elder_article.asp?id=2751

These articles explain which rules apply everywhere, and which can vary. Then use the "State Information" link in the colored bar at the top of the page to find the details that apply in the state where you live. There should be a link "Get Key Medicaid Information for ___" or something similar.

If your Alzheimer's loved one is your spouse, you are in a particularly tricky situation from a financial standpoint, since you are legally responsible for your loved one's medical expenses. It is especially important that you see a very qualified attorney, to protect your share of your assets. Pay particular attention to the sections of the Medicaid Rules article regarding "The Transfer Penalty" and "Protections for the Healthy Spouse. Your home is protected as long as you are living there, although Medicaid may recover what they've paid out for your spouse (and you, if needed) once both of you have died. One car isn't counted in the assets, either. Your premarital property is, unfortunately, not exempt -- Medicaid considers it to be joint, even with a prenup agreement.

You will also need an Advance Health Care Directive, which you can find on the internet. You do not really need an attorney to draw one up, although many elder law attorneys will include it as part of a "package deal". If you use one of the internet forms, your loved one must sign it in the presence of either a notary, or two witnesses (neither of whom is the agent appointed to act on the behalf of your loved one in the AHCD). (A patient advocate or ombudsman must sign if the loved one is a patient in a skilled nursing facility.)

A booklet that I found very helpful in preparing my own Advance Health Care Directive is "Hard Choices for Loving People." This was written by a chaplain who has worked with terminally ill patients and their families for many years. I had no idea what choices I might have to make, or what their ramifications might be, and this booklet really helped me decide what I wanted for myself. You can download it free at:

http://www.hardchoices.com/

You will also need HIPAA waivers. Most healthcare providers require patients to sign a "Health Insurance Portability and Accountability Act (HIPAA)" disclosure authorization before discussing or sharing their health information with another party *unless* you attend appointments with your loved one -- that, by itself, indicates your loved one is willing to share their health information. Sooner or later, however, you will need HIPAAs just to deal with financial matters, or talk with healthcare providers over the phone, so it’s important to get your loved one to execute these forms as soon as possible, while he is still competent to do so. Most doctor's offices and insurance companies provide their own. Medicare also has its own form; your loved one can sign it, or you can sign for your loved one using your DPOA.


>> EDUCATE YOURSELF ABOUT ALZHEIMER'S

The Alzheimer's Association has all sorts of helpful information, starting on its home page (http://www.alz.org/index.asp.) One of the better resources is Coach Broyles' Playbook for Alzheimer's Caregivers, which you can download for free at:

http://www.alzheimersplaybook.com/

One of the very best articles I've ever seen is "Understanding the Dementia Experience", by Jennifer Ghent-Fuller. This is a must-read for any caregiver, family member or friend:

http://alzheimers.boomja.com/A-must-read-Understanding-the-Dementia-Experience-59731.html

You may not be able to get your loved one to talk to you about his illness ... he may not be ready to face it, or he may not even be aware that he has a problem. The latter is a symptom of Alzheimer's, called "anosognosia", that can develop quite early in its progression. You can learn more about that at:

http://alzheimers.boomja.com/Alzheimer-s-and-Anosognosia-32271.html

HBO, with the help of the Alzheimer's Association and the National Institutes of Health, recently launched "The Alzheimer's Project." This includes a series of made-for-TV documentaries and supplementary videos, all of which can be watched via the internet:

http://www.hbo.com/alzheimers/memory-loss-tapes.html
http://www.hbo.com/alzheimers/the-supplementary-series.html

One of the best websites for caregiving tips is Beverly Bigtree Murphy's:

http://www.bigtreemurphy.com/

We often talk about the stages of Alzheimer's. Most of the medical profession uses a 3-stage system (mild, moderate, severe), while caregivers typically use a more detailed, 7-stage system. The stages are described at:

http://alzheimers.boomja.com/Stages-of-Alzheimer-s-26317.html

There are also some excellent books -- we caregivers all have our favorites. Many recommend "The 36-Hour Day" by Nancy Mace and Peter Rabins. This is a good and very detailed resource, neatly indexed, but to me, a difficult read. I keep it on hand for looking things up, but for readability (and a more positive approach), I like "Creating Moments of Joy" by Jolene Brackey, "The Validation Breakthrough" by Naomi Feil, "Learning to Speak Alzheimer's" by Joane Koenig Coste, "Speaking Our Minds" by Lisa Snyder, and "Young Hope the Broken Road" by Tracy Mobley. "Alzheimer's Early Stages" by Daniel Kuhn is another good resource.

BUT!!! please keep in mind that no two Alzheimer's patients are the same. Some patients develop serious behavioral problems but most do *not*. So do not panic. Educate yourself, learn about what *might* happen ... but ... hope for the best while you plan for the worst.


>> TREATMENTS

While it is true that Alzheimer's (and other dementia syndromes) cannot be cured, there are treatments that can improved the loved one's life and slow down the onset of symptoms. Explore the medicines that might be helpful with your loved one's doctor. There are cholinesterase inhibitors (aricept, exelon, razadyne/galantamine) and namenda (which is an NMDA receptor antagonist). Some patients respond very well to those, and actually improve for a while. Many people believe that they only work for a relatively short period of time, but recent studies have shown they can be effective for five years or more. They may cause unpleasant side effects in some patients, so educate yourself and keep an eye out for them. Then there is Axona, a brand-new, prescription-only "medical food", so new that most doctors haven't even heard of it. It appears to be well-tolerated, and many patients have improved quite a bit on that, too. It can be taken with the other Alzheimer's meds. See:

http://www.about-axona.com

Many Alzheimer's patients develop depression, so an antidepressant may often help your loved one's symptoms. Not every antidepressant will work for a given person; it may be necessary to try several different ones, to find the one that's right for your loved one. They do take time to kick in; and if your loved one doesn't respond well and has to switch to another, it's my understanding the old one should be tapered off before starting a different one, so the process may take time. Be patient ... it will be worth it.

If your loved one is still at a relatively early stage, cognitive therapy may be helpful. If his doctors are not familiar with the types of cognitive therapy that may be available, look for stroke rehabilitation hospital, and talk with the therapists there.

Some patients may develop various types of behavioral symptoms -- such as sundowning, insomnia, agitation, or anxiety. There are many non-drug interventions that can be helpful in resolving these symptoms, which should be tried first. See:

http://alzheimers.boomja.com/Caregiving-Tips-for-Coping-with-Symptoms-27697.html

If all else fails, however, there are also medicines that can be successful at soothing your loved one and helping him enjoy a higher quality of life. See, for example:

http://alzheimers.boomja.com/Treatments-for-Alzheimer-s-Symptoms-48701.html

If your loved one might be interested in participating in a clinical trial, there are trials currently recruiting for some very exciting new drugs. Most of them will accept patients who are 55 or older. Information about clinical trials for all types of disorders can be found at:

http://clinicaltrials.gov/

I like clinical trials for a number of reasons. For one, I don't like taking this disease lying down! Participating in a clinical trial can give your loved one access to a potentially promising new treatment years before it becomes available to the general public. Many trials are initially "double-blind, placebo-controlled", which means that you will not know whether your loved one is receiving a "sugar pill" or the real drug itself. However, many trials are also designed to have a follow-on "open label" stage, in which all participants in the trial will be given the drug itself. And some of the later-stage trials (Phase III) will allow participants who appear to be helped by the drug to continue taking it even after the trial is over.

A recent documentary on Alzheimer's said that there are more than 90 drugs currently in clinical trials. Some of these are new combinations of, or new applications for, established drugs; some are combinations of nutrient supplements; and some are entirely new drugs that have only been tested in animal models, such as mice, to date. What is truly exciting is that nowadays, the new drugs target many different mechanisms of action.

So do your homework, and be sure to pick out the trial, and the investigational new drug, that's right for your loved one. Check into what is already known about safety and efficacy; and be sure to note which Phase the drug is in. The earlier the Phase, the less that is known.


>> HEALTH CARE

Eating the right diet is important for anyone, but especially so for an Alzheimer's loved one. Studies have shown that the "Mediterranean diet" (with nuts) can not only help prevent or delay the onset of Alzheimer's, but can also slow the progression of Mild Cognitive Impairment and Alzheimer's. This diet is characterized by high intake of vegetables, legumes, fruits, and cereals; high intake of unsaturated fatty acids (mostly in the form of olive oil), but low intake of saturated fatty acids; a moderately high intake of fish; a low-to-moderate intake of dairy products (mostly cheese or yogurt); a low intake of meat and poultry; and a regular but moderate amount of ethanol, primarily in the form of wine and generally during meals. (For those of you who don't like the idea of drinking wine -- which has been found to delay the onset of Alzheimer's and slow its progression -- substitute grape juice, and raisins.) Certain supplements, such as the essential polyunsaturated omega-3 fatty acids EPA and DHA ("fish oil"), are also often recommended for AD patients.

Exercise is important -- physical as well as mental. Talk with your loved one's doctor about the amount of exercise that is reasonable, and if your loved one hasn't been exercising, start slowly. For example, my husband and I go for a walk at a nearby park almost every day. We now walk almost two miles, which is good, and fun, for both of us. We like the scenery, watching the birds and animals, and talking with other people walking there. Socializing is also very healthy for Alzheimer's patients, as long as they are in situations in which they feel comfortable. Large groups and/or noisy environments may be upsetting.

Playing games that require thinking, such as puzzles or board games such as chess or checkers, discussing current events, reading, etc, are good for exercising the brain. Many early- to mid-stage Alzheimer's patients enjoy computer games designed to exercise the mind. I've seen recommendations from Alzheimer's patients themselves for Nintendo's Brain Age and Brain Age 2, Word Coach, and Posit. You might also consider checking with a local stroke rehab facility; their therapists may be able to help your loved one function more fully in the earlier stages.

Despite popular wisdom, early-stage Alzheimer's patients are capable of learning or, at least, re-learning lost skills. One technique is called "spaced retrieval", which is a training process that allows others to formally access the retained ability of people with dementia to have new procedural learning. See:

http://www.myersresearch.org/

BUT!!! it is very important to encourage exercises that our loved ones can actually do, and not try to get them to do things which frustrate them. Exercising the brain, or simply trying to interact with other people, can be surprisingly tiring for our loved ones, so make sure they get plenty of rest.


>> DEVELOP A SUPPORT TEAM

It's going to be very difficult to make it through this journey without a lot of support. Alzheimer's caregiving is a marathon, not a sprint. To provide effective care for as long as possible, and to maintain your own health and life, you absolutely cannot go it alone. Once you have a solid diagnosis for your loved one, think about telling the rest of the family -- you'll need their understanding and help. Consider when, and how, you should tell close friends.

Many of us agonize over whether and when to tell others. However, relatives, friends, neighbors, and colleagues have probably already noticed changes in your loved one. Many of them will appreciate knowing what to expect and having the opportunity to offer assistance.

Instead of doing everything yourself, divide key responsibilities, if appropriate. For example, one sibling could handle finances and another the medical issues. This makes each task less overwhelming.

Start a list of contacts who offer to lend a hand. Even if you don't need them right now, later these helpers can provide rides, deliver meals, run errands, make social visits, or provide company and care when you must go out. You'll also need a circle of friends you can just call for a sympathetic ear when you're stressed.

Collect handy references. The people in your loved one's daily life can sometimes best point you to handymen, yard-care companies, reliable taxi services, volunteer networks, and other helpful services.

Identify backup care. Primary caregivers need someone with good judgment and the ability to provide the level of care needed to relieve them in an emergency or when they must get away. If you can, find a familiar face. To hire professional backup care, contact a local home health or personal-care agency, or look for a certified guardian or certified conservator who works with private clients. To find certified guardians, go to:

http://www.guardianshipcert.org/

Look for support groups. Your local Alzheimer's Association chapter can tell you what face-to-face groups meet in your area. You can find contact information for your local chapter at: http://www.alz.org/apps/findus.asp

Some of the best support, in terms of understanding and compassion, and tons of helpful tips, can be found through online discussion forums. The largest and most active is run by the Alzheimer's Association:

http://alzheimers.infopop.cc/eve

But remember!!! No two Alzheimer's patients are the same. You will read some very distressing posts on this forum ... many of them may *never* apply to your loved one. The caregivers whose loved ones *do* develop very distressing symptoms need a lot more help than those whose loved ones have an easier journey; so, naturally, they post a lot more often. These discussions are not representative of the average patient. Also, many of the people on these discussion forums are caring for loved ones with Lewy body dementia or frontotemporal dementia, both of which tend to cause much worse behavioral symptoms than Alzheimer's.


>> IDENTIFY LOCAL ALZHEIMER'S SUPPORT SERVICES

When you call your local chapter of the Alzheimer's Association, ask to speak to the social worker. You will get assistance in locating the special services in your area, for helping you with in-home care when you reach that point, respite care for you, perhaps adult day health care for your loved one when you're at work, or need time to yourself; funding that may be available to help pay for these services; and if you need a good doctor for your loved one, help in locating dementia specialists in your area.

Other places to look for help:
* Local places of worship. Even if you don't belong to any, they often run many programs that are open to all.
* Local hospitals. These often run programs, and/or have social workers who can help you.

You may want to get professional help in determining the support your loved one will need, or locating select resources or services. Consider hiring a geriatric care manager (or GCM, a specialist in assessing an elder's needs, arranging help, and monitoring the situation as needed). GCMs charge about $50 to $200 an hour, depending on where you live, or a flat fee for an initial assessment. To find a geriatric care manager, go to:

http://www.caremanager.org/

Or, ask your Area Agency on Aging about free or low-cost assessments (by social workers, care consultants, and other professionals who provide services similar to those given by GCMs). To find your Area Agency on Aging, go to:

http://www.n4a.org/about-n4a/?fa=aaa-title-VI

These professionals can show you what's needed in your specific situation: home safety modifications, memory support, personal care, and more. They can also refer you to medical specialists, eldercare attorneys, transportation and housing options, and other resources.


>> AND MOST IMPORTANTLY

Mostly ... love your Alzheimer's loved one. Please don't be so focused on what you have lost that you don't enjoy what you still have. Alzheimer's can progress very slowly, and your loved one may still have many good years ahead of him.