Dementia is tough on everyone.
The person suffering with it. The family members who become caregivers.
And even for healthcare providers who do not always have solutions to the many disconcerting situations this disease creates for patients and their families.
When you are confronted with dementia—as a patient or caregiver—the best defense is a good offense. Begin by educating yourself about the disease, about the treatments and lifestyle practices that can work to slow the disease, about the behaviors and challenges you can expect as the disease inevitably progresses and about the tricks of the trade for managing life after a dementia diagnosis with as much joy and dignity as possible.
What is Dementia?
Dementia is an umbrella term that covers a multitude of disorders that impair memory to the point that daily functions become difficult or impossible. Alzheimer’s disease, vascular dementia, frontotemporal dementia and Parkinson’s are some of the more common dementia diseases.
Although dementia is not a normal part of aging, the biggest risk factor for the disease is age. More than half of us who reach 85 years old or older will suffer memory loss. Dementia is progressive and there is no cure.
Dementia vs. Typical Forgetfulness
It is easy to confuse the very early signs of dementia with typical memory issues we all experience as we age but they are different. For instance, it is normal to misplace your keys or your glasses. It is not normal—and may be an indicator of dementia—to put your keys or glasses in an unusual placesuch as the freezer or in the back of a drawer and then have no recall of where you put them.
It is normal to walk into a room in your home and forget your purpose for going there. It is not normal—and may be an indictor of dementia—to walk into a room in your home and for a moment not know where you are.
Difficulty performing once routine mathematical tasks (such as balancing your checkbook or adding a column of numbers) or feeling overly challenged when learning new things (such as how to work a new appliance) may also indicate a serious memory disorder. Simple checklists of early warning signs can be found on many websites. For a list of 10 signs of early dementia, visit the Alzheimer’s Association website at www.alz.org/alzheimers_disease_know_the_10_signs.asp.
Get Diagnosed: The Sooner the Better
If you suspect dementia, get a diagnosis from a neurologist who specializes in memory loss and do so as soon as possible. The print edition of Aging Resources magazine has a resource section with practices and organizations that offer this service. Insist that both the patient and close family members are part of the evaluation and are given the opportunity to discuss with the physician what has caused them to suspect dementia. While most patients are well aware their ability to process information has changed, a close family member is usually in a better position to recall and give details of specific incidents and behavior changes, giving physicians a more complete picture.
While there is no cure for dementia, there are medications and lifestyle practices that can slow the progression of the disease. Also, other conditions, such as depression, stress, poor sleep, hearing loss or an underlying infection or illness can worsen symptoms. Simply treating these disorders often can return some functioning.
With a diagnosis in hand, a physician is better able to guide the patient and the family as to how to manage symptoms now to maintain the greatest independence and to give all concerned an idea of what to expect for the future.
Make a Plan
Although only one member of the family may have dementia, everyone in the family is affected so it makes sense to come together as a family in these early stages and put together a plan of action to care for the patient and manage life as the disease progresses.
As a family, you should decide on roles and responsibilities for everyone who wishes to be part of the care management. Be realistic in your commitments. Dementia is for the long haul. Commit to what you can do and then find resources in the community to help where you and others cannot.
Securing the help of a professional at this point — such as a geriatric care manager, a social worker or someone from your local council on aging such as the Council on Aging for Henderson County — may be a good idea. To find a certified geriatric care manager in your area, visit the Aging Life Care Association website at www.caremanager.org. They are trained to help you know what to plan for and can inform you about support services and various resources in your area. They also can help you weigh your housing options and help you navigate the system overall.
With dementia, what is unthinkable now—moving to assisted living, using adult day care, needing round-the-clock care—can likely become reality. With a plan, these transitions become easier financially and emotionally for everyone.
A Word on Housing
Someone with memory impairment functions better in familiar surroundings. It is to everyone’s advantage to move the patient into whatever care situation that was chosen before rather than after the full force of that care is truly needed. This way the person can make friends, get used to routines and form relationships with staff while they still have the ability to do so.
As you look at living situations, the goal is to only move the patient once. So consider places that offer both assisted and skilled care in the same building or at least on the same campus. If symptoms worsen and skilled nursing may become necessary, it is healthier for the patient to be in familiar surroundings with trusted people. Sstaying put also increases opportunities for independence and reduces fear and makes it easier for the on-site friends to visit.
Get Support for the Caregiver
Part of every plan for dementia care must be to care for the caregiver. This means ensuring caregivers don’t overcommit themselves and that their needs and desires are considered as well as those of the patient. They should take time to join a support group online or in person for emotional support as well as to gain insight and strategies for managing the disease. Respite care should be built into the schedule to ensure caregivers have time for rest and for living their own lives.
Remember that the care plan is not written in stone. The patient and the caregiver should feel free to change it as circumstances and abilities change. For instance, a caregiver may commit at first to keeping the patient at home. As the disease progresses or life circumstances change, this may prove to be too stressful for the caregiver. At that time, the caregiver should feel free to change the plan and find a solution that works better for them and the patient.
Your Family Is Not Alone
More than 350,000 people in North Carolina today are suffering with dementia and that number is expected to rise as the population ages. There is nothing quick and easy about dementia. But with early diagnosis, an acceptance of the realities of the disease and a proactive approach to management, both patients and caregivers can maintain the highest quality of life possible for as long as possible.