Caring for the Caregiver: a Plan for Dealing with Dementia in a Family Member
By Scott Tong, MD
As a result of an aging population worldwide, the incidence of Alzheimer’s disease and related forms of dementia is rising to record levels, now affecting more than 44 million people, with a new case developing every three seconds. In the US, 5.8 million people are now living with Alzheimer’s, projected to more than double by 2050. Behind these staggering numbers are millions more family members and caregivers – almost 16 million Americans – taking on the challenge of guiding their loved ones through one of life’s toughest passages. But who’s taking care of the caretakers?
As a family medicine physician for 25 years, I’ve witnessed how draining it can be to care for someone with an irreversible and progressive neurological disorder. If you are a caregiver, please know that there’s likely a long road ahead, making it essential to remember: take care of the caretaker FIRST. If you are not healthy mentally, emotionally and physically, you can’t take care of your loved one in the years to come. Following is information to help you understand what your loved one is feeling as the illness progresses and prepare for its impact on you by developing a thoughtful, long-term care plan.
Understand the symptoms of Alzheimer’s vs. normal aging
While memory loss is a normal part of aging, the mild forgetfulness most of us will experience is different from the significant decline in brain functions seen in Alzheimer’s and other forms of dementia. However, when dementia is in the earliest stages, it can be difficult, even for a physician, to distinguish between memory issues that are not simply age-related, but represent a real deterioration in memory, language, analyzing and problem-solving skills. Blood and imaging tests may be used, but more valuable is information you, other relatives and close friends can share with the physician regarding changes seen in your family member’s behavior, memory, thinking and daily activities, including: getting lost more frequently, missing appointments, forgetting to turn off the water or stove, or misplacing items, such as putting a wallet in the kitchen utensils drawer. Click here for more information on “Normal Aging, Mild Cognitive Impairment or Dementia?”
Prepare for behavioral changes
Be aware that it is very difficult to try to reason with a person who has dementia as he or she lacks perception and logic. Very sadly, you may see a regression to toddler-cognition and behavior, such as extreme clinginess or irritability. Just like a parent dealing with little ones, it’s best to calmly listen and/or try to distract your family member who repeatedly asks the same questions or becomes testy – how you behave will have a significant impact on how they react.
Accept your mixed emotions as expected and normal
Know that your emotions may be volatile at times, and let yourself feel them without guilt. You may really love and want to take care of your family member with dementia, but at the same time feel angry that you have been left with the role of lifelong caretaker. Similar to grieving, it is a slow process to accept that the essence of someone you love has been lost. Caretakers who cope best accept their mixed feelings and come to cherish any glimpse of their loved one’s old selves.
Identify available resources in your community
Even a spouse of 50 years can be a challenge to deal with if suffering from dementia, and guidance from professionals and peers can prove immeasurably helpful and comforting. Don’t try to handle everything on your own, but turn to the many places and people in your community available to help. These can include hospital or community support groups for patients with memory loss, in-home assistance, visiting doctors and nurses and Meals on Wheels.
Ask for help from family, friends and healthcare providers
There’s no doubt family dynamics can be tricky, but try assigning responsibilities according to specific areas of strength and interest. This can work well with families who are geographically dispersed or not strongly connected, as I recently witnessed with one of my patients. Despite being nearly estranged from her siblings, she was able to arrange care for her mother by asking one to take on administrative tasks (insurance matters, assistants’ schedules), another to handle medical issues with the doctors, and a third to manage the financial aspects of paying for care, while she continued to deal with day-to-day care.
Find time for yourself
Respite care is not a maybe or a ‘nice to do’ – it’s a MUST. Check with your employer about taking time off through the Family Medical Leave Act, explore financial assistance available through Medicare, and take advantage of community organizations and resources established to help residents caring for family members.
Set up lines of clear communication with your loved one’s doctors
Prepare for visits to the doctor with a list of questions and concerns to refer to during the appointment. Provide details on any notable changes in your loved one’s behavior, routines or eating habits, and bring a list of medications taken for other health conditions. Make sure you ask your doctor’s goals for treatment e.g. does it make sense to take Lipitor to prevent heart disease if the patient is at end-stage dementia? Understand that as dementia progresses, the goals will change. Most importantly, don’t be afraid to ask for clarification if you don’t fully understand what’s needed.
You may also want to consider joining a concierge medicine practice to ensure you receive the time needed to discuss current concerns, coordinate care and anticipate future issues. Physicians in traditional practices, overwhelmed by the number of patients they must see each day, will not be able to provide the time or personalized attention that can greatly ease the journey for both you and your loved one.
If you are caring for a loved one with Alzheimer’s, I hope you’ll take the time to:
- Educate yourself about the disease. Online resources are abundant, including alz.org, www.alzfdn.org and www.alzheimers.gov.
- Find appropriate respite care and use it on a regular basis.
- Form a trusted group of healthcare providers, family members and friends who will be with you and your loved one until the end.