This blog was published on November 23, 2015 and updated on January 15, 2020.
Dementia can be a terrifying diagnosis, especially when you do not know what to expect. Dementia, however, does not have to be a dark and mysterious force haunting every second of your loved one’s life. There’s still plenty of joy to be found after a dementia diagnosis. Having the right medical information can help you or your loved one plan for the future, choose palliative care options, and pursue the right treatment.
1. Which type of dementia do you think it is, and why?
Dementia is an umbrella term for loss of memory and mental abilities. Alzheimer’s disease accounts for 60 to 80 percent of dementia cases, but many other dementias can affect cognition. Frontotemporal dementia, for example, tends to affect behavior before it affects memory, while primary progressive aphasia attacks speech and language. Of course, a doctor may not know a patient’s exact dementia diagnosis because the symptoms of different dementias can overlap. A precise diagnosis may be difficult or impossible to make at first.
Although most forms of dementia are chronic and untreatable, there are some treatable medical conditions that merely mimic them. For example, severe depression can cause many of the same symptoms. Do not assume that changes in personality or memory loss mean a person has dementia, or that the condition is untreatable. Seek medical care as early as possible.
2. How far has the dementia progressed?
Is this type of dementia measured in stages? Which stage of progression does a loved one’s doctor believe the dementia has reached? What has led them to these findings? There is no way to predict the course of dementia. Some people remain relatively independent for years, while others quickly spiral into poor health. Knowing how severe the dementia is, however, can help you plan for the future and anticipate looming needs.
3. What kind of changes and conditions should I anticipate?
Your family’s physician can identify a number of issues that commonly crop up in dementia patients. For instance, in addition to confusion, you may notice frustration or agitation, particularly in the evening, as well as depression. On the physical side, your loved one may lose the ability to control bodily functions, and can be vulnerable to urinary tract infections. Those with severe Alzheimer’s disease may have trouble chewing or swallowing, while changes in depth perception can make patients more vulnerable to falls.
4. What medication do you suggest, if any?
At best, medications can temporarily relieve memory problems and improve alertness — they will not stop the progression of the disease. Possible drugs include donepezil (Aricept), rivastigmine (Exelon), or galantamine (Reminyl) for if the dementia is mild or moderate, and memantine (Namenda) for if the dementia is moderate to severe. Medication to control conditions that affect the heart can sometimes slow cognitive decline in patients with vascular dementia. Ask about possible side effects as well as harmful reactions to any drugs, herbal remedies, or supplements your parent is already taking.
Although medication will not cure dementia, some drugs may help mitigate its symptoms. Seniors who feel anxious or depressed may find relief from psychiatric drugs. And of course, if your loved one experiences chronic pain or similar conditions, it’s important to continue to treat these. You may need to become a strong advocate, because your loved one may eventually lose the ability to tell you when they are in pain.
5. What other types of treatment could help?
There are many supportive treatments that may help, although there is no known cure for most types of dementia. Nutritional and emotional support are very important. Counseling or psychotherapy may help someone come to terms with having dementia as well as alleviate depression or anxiety. As well, exercise may slow the progression of impaired thinking, and occupational therapy can teach people new ways to cope as their condition changes.
6. Can my mother or father still drive?
Although you may want to avoid dealing with the often sensitive topic of driving, you need to know the signs that would suggest that your parent can no longer drive safely. In addition, learn what steps you can take if your loved one is a danger on the road but refuses to stop driving.
7. Is living at home still an option?
You also need to find out if it is still safe for your parent or loved one to live independently at home. If so, ask how you can make the home more senior friendly, or what home support services could help your parent or loved one age in place. Unfortunately, the progressive, degenerative nature of dementia means that nearly all dementia patients will eventually require full-time care.
8. How can I help?
If your parent or loved one can still live at home, find out ways you could help them out. For example, in addition to making the house more senior friendly, decluttering might make it easier for your loved one to focus on a task at hand. Ask your doctor whether there are educational or support groups in your area that can teach you and your family how to cope with the changes happening in your loved one’s brain.
9. What type of specialists should we see?
Ask your family doctor for referrals to specialists such as a geriatrician, a neurologist, a visiting nurse, or an occupational therapist. Each of these will offer a distinct and targeted approach to meeting your loved one’s specific needs.
10. What can I do to support myself?
Finally, don’t forget about yourself. Ask the doctor if he or she can refer you to a dementia support group. (And remember: If a friend or family member asks if they can help you out, the correct answer is almost always “Yes!”)
Caring for a person with dementia is challenging work that demands ongoing commitment. It’s a marathon, not a sprint, and that means you must take care of yourself. Seek help from friends and family. Prioritize self-care, and accept help whenever it is available. If you experience signs of caregiver depression or anxiety, seek help from a doctor or therapist. These are treatable conditions, and getting the right support can help you sustain the energy that caregiving demands.