Living with Dementia

Dementia is difficult for everyone – for the person diagnosed with it, for the family members who become caregivers and even for healthcare providers who do not always have solutions to the many challenging situations this disease can create for patients and their families.

When confronted with dementia – as a patient or caregiver – the best defense is a good offense. Begin by educating yourself about the disease, treatments and lifestyle practices that can work to slow the disease, behaviors and challenges you can expect as the disease progresses and ways to manage 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, cerebrovascular disease, Lewy body disease, mixed pathologies, front temporal lob degeneration and Parkinson’s disease are some of the more common causes of dementia. 

Although dementia is not a normal part of aging, the biggest risk factor for the disease is age. For example, the majority of people with Alzheimer’s dementia are age 65 or older and about a third of people age 85 or older have Alzheimer’s dementia. Breakthroughs on causes and treatments continues but currently, dementia is progressive and has no cure.

Dementia versus 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 place, such as the freezer or in the back of a drawer, and then have no recollection 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 indicator 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 excessively challenged when learning new things such as how to work a new appliance, may also indicate a serious memory disorder.

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.Insist that both the patient and close family members or loved ones 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 that their ability to process information has changed, a loved one 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 currently is no cure for dementia, there are medications and lifestyle practices that can slow the progression of the disease especially when a diagnosis is made early. Also, other conditions, such as depression, stress, poor sleep, hearing loss, vision problems, an underlying infection or other illness can worsen symptoms. Simply treating these disorders often can return some memory function.

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. 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 may be a good idea. These professionals are trained to help you know what to plan for. They can inform you of support services and various resources in your area, help you weigh your housing options and help you navigate the system overall.

With dementia, moving to assisted living, using adult day care or needing round-the-clock care — can become necessary as the disease progresses. With a plan, these transitions become easier financially and emotionally for everyone.

Housing Considerations

Someone with memory impairment functions better in familiar surroundings. To that end, it is to everyone’s advantage to move the person with dementia into the care situation chosen before rather than after the full force of that care is needed. By making a move before dementia progresses, individuals 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, focus on the goal of only moving your loved one only once if possible. 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 becomes necessary, it is healthier for your loved one to be in familiar surroundings with people he or she trusts. Staying put also increases opportunities for independence, reduces your loved one’s fear and makes it easier for friends who live on-site to visit.

Prioritize Support for the Caregivers

Part of every plan for dementia care must be to care for the caregivers. This means ensuring caregivers don’t overcommit themselves and that their needs and desires also are considered. 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 person with dementia and the caregivers should feel free to change it as circumstances and abilities change. For instance, a caregiver may commit at first to keeping a loved one 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 him or her and the patient.

Advances in Treatment

With increased scientific research now being devoted to Alzheimer’s disease and other forms of dementia, advances in diagnosis and treatment are occurring more rapidly. Medications for memory, treatments for sleep changes, strategies for addressing changing behaviors and a host of alternative therapies are improving the quality of life for dementia patients and their loved ones.

You and Your Family are Not Alone

Millions of people in the United States have dementia and that number is expected to rise as the population ages. There is nothing easy about the often long course of dementia. But with early diagnosis and a proactive approach to management, both people with dementia and their caregivers can maintain the highest quality of life possible for as long as possible.

Tips for Helping Someone with Dementia 

Being there for someone with dementia can pose challenges but there are approaches that can help, many of which involve being supportive, compassionate and understanding of changes caused by the disease.

  • Simplify: Talk about one thing at a time, use fewer words and speak slowly. Sharing too much information – and multitasking – can be confusing and overwhelming. Realize that logic does not apply to an illogical disease.

  • Let your loved one carry out tasks: Offer to help but also be willing to not help so your loved one has the chance to feel good about accomplishing something on his or her own.

  • Use memory aids: Lists, signs, dry-erase boards, alarm clocks and calendars can help as can having designated spots for commonly misplaced items.

  • Be attuned to eyesight and hearing issues: Vision and hearing problems can worsen – and in some cases can mimic – dementia symptoms. Peripheral vision can be lost and perception can change, too, as the disease progresses. Make sure your loved one has his or her eyesight and hearing checked regularly, especially if he or she is having trouble with avoiding obstacles, seeing well even when wearing glasses, struggling to follow a conversation or having problems with balance.

  • Show and tell: Visually communicating with your loved one is as important as talking with him or her so be sure to show and say what you mean. To assist with his or her comprehension, make your loved one’s living space as free as possible of distractions such as visual clutter and noises. Use hand gestures, visual cues and prompts to help convey what you mean.

  • Go down memory lane: Reminisce about the past by looking at old photographs and mementos and telling stories from days gone by.

  • Practice patience and kindness: Reassure your loved one and focus on his or her feelings rather than the facts. Apologize and say “I’m sorry” regularly when he or she is frustrated, sad or angry. Respond with affection through smiles and hugs.

 

ALZHEIMER’S ASSOCIATION RESOURCES

 

GERIATRIC CARE MANAGERS

  • Find a certified geriatric care manager or Aging Life Care professional at the Aging Life Care Association at aginglifecare.org

 

CARING FOR THE CAREGIVER

Find resources and tips for caregivers on page XX.