It starts out slowly, almost imperceptibly. The misplaced keys. The forgotten birthday or anniversary. Using the wrong word or losing the thread in mid-conversation. These are often dismissed as typical signs of aging, but in…
It starts out slowly, almost imperceptibly. The misplaced keys. The forgotten birthday or anniversary. Using the wrong word or losing the thread in mid-conversation. These are often dismissed as typical signs of aging, but in some people, they may be the earliest signs that something bigger is at work — the development of dementia or Alzheimer’s disease. When a doctor diagnoses dementia or Alzheimer’s in your loved one, you should be sure to ask a lot of questions to make sure you understand your loved one’s current state of being and so you can appropriately prepare for how this progressive disease could change over time.
1. Is it Alzheimer’s or another kind of dementia?
There are several types of cognitive decline people may experience. “Dementia is simply an umbrella term,” says Dr. Susann Varano, a geriatrician at Maplewood Senior Living, a Westport, Connecticut–based senior living residence company. “If a physician says, ‘you have dementia,’ it’s the same thing as saying, ‘you have cancer.'” She says it’s critical to pinpoint exactly which type of dementia it is. “Is it Lewy body dementia? Is it vascular? Is it a frontotemporal disorder? Is it mixed dementia? Is it Alzheimer’s disease?” Although all dementias affect the brain and cognitive function, “each of those types of dementias have a different path. Some accelerate more than others and some have different presenting symptoms, so it’s very important to get the actual diagnosis of dementia.”
Varano says many times, physicians see an older adult who’s complaining of memory deficiencies and automatically assume it’s dementia. The doctor may begin treating it as such without doing enough due diligence to rule out other possible culprits. “Alzheimer’s is a diagnosis of exclusion, so to be fair to the patient and to the caregiver, things have to be excluded,” and your doctors should evaluate for reversible dementias and pseudodementias, she says. Other diseases, conditions and side effects of medicines can sometimes mimic some of the symptoms of dementia or Alzheimer’s.
For example, “did that person have their thyroid and B12 levels evaluated?” she asks, because disruptions in these areas can cause memory loss. Could it be Parkinson’s disease, another common ailment that’s prevalent in older adults and sometimes has symptoms similar to those of dementia. “It’s common to have an older adult with urinary incontinence, dementia, and a gate disturbance and that triad in itself is normal pressure hydrocephalus,” a build-up of cerebrospinal fluid that causes increased pressure in the brain. It’s more common in older adults, but it’s reversible with the right treatment.
Depression is also often misdiagnosed as dementia “because depression in the elderly is extraordinarily common,” Varano says, and the two conditions share many symptoms including impaired concentration, lack of motivation, loss of interest, apathy, psycho-motor retardation and sleep disturbance. “You see that in both conditions and rather than jumping and giving someone Aricept (a cognition-enhancing medication used to treat Alzheimer’s known generically as donepezil), it’s extremely valuable to get their history and do a geriatric screen to see if there’s an underlying depression,” Varano says.
A lack of restorative sleep — caused by insomnia, difficulty staying asleep, sleep apnea or early morning waking — can result in symptoms like agitation, a clouded mind, increased car accidents and a decreased ability to focus that are sometimes mistaken as dementia. “When someone comes in presenting these symptoms, the physician should ask about snoring and sleep apnea or waking up two or more times a night to use the bathroom,” a condition called nocturia. “A lot of people just assume this is the normal biology of aging, but it’s not. It’s a condition, and it’s treatable,” Varano says.
And through all this, it’s important to stay calm, she says. “Don’t panic. Don’t assume that because you’re old and you forgot something that you have Alzheimer’s.” But on the flip side, it’s important to pay attention to clues and not spend a lot of time in denial. “Some people see (cognitive) deficits and think it’s just normal aging. They don’t want to get the diagnosis that mom or dad has Alzheimer’s disease because they don’t want it,” but it’s important to have your loved one checked out when symptoms start, as that’s the best time to slow the progression of the disease. “Face your fears and get an accurate diagnosis,” she says.
3. How will the disease progress?
Once you’ve pinned down an appropriate diagnosis, it’s important to know what’s in store for your loved one over the coming the weeks, months and years. Varano says you want to know, “What is the typical course of this disease so I can prepare emotionally, financially and physically.”
To help you in figuring out your next steps, such as whether you’ll be moving your loved one into assisted living or a long-term care facility of some type, you need to have an idea of what to expect. Megan Carnarius, a registered nurse, founder of Memory Care Consulting and author of “A Deeper Perspective on Alzheimer’s and Other Dementias: Practical Tools with Spiritual Insights,” says this may involve talking with a lawyer to get your paperwork organized, which needs to be done well before a dementia diagnosis is made because “you can’t typically write a power of attorney if someone has this diagnosis.” Some attorneys won’t be comfortable arranging that if they’re concerned about the patient’s competency. Therefore, “if families have suspicion that the person is getting more confused and they feel like they need to go to the doctor to get a diagnosis, they should already have taken care of the financial and legal” concerns.
Carnarius says you should also ask the diagnosing physician whether you need to see a geriatric specialist for additional assessment or treatment, and to find out whether the physician you’re working with embraces current treatment options for patients with dementia. She says not all physicians are comfortable treating a dementia patient, and you should find that out ahead of time.
Varano adds that you may want to seek help at a specialized geriatric assessment clinic to confirm the diagnosis and connect you to additional resources. “That clinic typically has social workers and case managers who will provide all the resources that are available for the situation.”
Along similar lines, Carnarius recommends asking “your physician if there are any research clinics or universities near them where the person could involve themselves in studies if they wanted to.” This could provide access to cutting edge treatment that may slow the progression of the disease and help researchers unlock better treatments and maybe even a cure someday.
Lastly, making sure your doctor checks your loved one’s status regularly with a standardized tool such as the Mini-Mental State Examination, a common test of cognitive function, can help determine objectively if your loved one’s disease has progressed and whether it’s time to seek more help. Other signs of disease progression include difficulty swallowing or walking, and when these symptoms arise you should definitely get it checked out.
4. Does my loved one understand what’s going on?
Carnarius says “about 50 percent of people diagnosed with dementia don’t have any insight,” into their condition and don’t realize that their cognitive skills are compromised. This can lead to frustrating exchanges when family members try to force the reality of the situation onto the person with Alzheimer’s or dementia. “A lot of people waste a lot of time and frustrate and mystify their loved ones by trying to force them to understand that they have memory loss instead of just moving on,” and finding nonconfrontational strategies for working with the person that will result in more positive interactions.
Dr. Zaldy Tan, Medical Director of the UCLA Alzheimer’s and Dementia Care Program and a geriatrician at the UCLA Medical Center, agrees, saying that it’s important for loved ones to realize that Alzheimer’s or dementia patients “can’t learn new information. I don’t think they need to correct every mistake,” such as when the patient insists a long-dead relative is coming to pick them up. Sometimes it’s better to just let it go.
5. What do I, as a caregiver, need to know?
There’s so much that caregivers are asked to do for loved ones dealing with dementia, and it would require a whole separate article to cover it in just the most basic detail. But suffice it to say, early on, it’s important to ask about what’s going to be expected of you as the caregiver as your loved one’s dementia progresses. Ask your doctor about resources that may be available locally to support you as the caregiver in your efforts. Tan runs an Alzheimer’s Caregiver Boot camp program at UCLA that packs much of what a caregiver needs to know into a day-long program. Find out if similar programs exist near you.
While you’re going to be heavily involved with caring for your loved one, it’s important that you not lose sight of taking care of yourself , and Tan says it’s important that caregivers not take things personally. Sometimes, when patients are having a bad day or are confused or scared, they can become combative or say harsh things, such as “I always loved your sibling more,” that trigger a response in the caregiver. It’s important to remember that “it’s the disease talking, not the person,” Tan says, so do your best to let such interactions roll off your back. Seeking help from a support group of other caregivers may be very helpful in dealing with this aspect of caring for a patient with dementia. Find out what resources are available to you locally, both in terms of learning how to be a caregiver and how to take care of yourself as you shoulder this important and often challenging responsibility.
You’ll also need to consider what your loved one’s living situation will be going forward. Depending on how advanced the dementia is, they may not be able to live independently for much longer, so you should consider whether it’s time to move them to assisted living, a long-term care facility, a memory care nursing home or another facility that can specifically care for them as their disease progresses. This can be a difficult decision that requires a lot of work, so you should start as early as possible with investigating your options and trying to find the right place for your loved one’s situation. “Ultimately, it’s all about safety,” Tan says. “You don’t want them to fall or choke on their food,” so as early as you can, start looking for the right facility so that when it comes time to move your loved one, you’ll all be ready.