How to Care for Someone with Lewy Body Dementia

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The diagnosis of Lewy Body Dementia (LBD) is life changing.

After the initial shock and grief wear off, it is critical that a long-term care plan is created and put in place as soon as possible. The quality of life for both the patient, as well as loved ones and other caregivers, is directly impacted by implementing a thoughtful care plan that accommodates for the range of changes and needs that evolve over time.

There is much you can do to provide high-quality care for someone with LBD. Educating yourself, securing support and making lifestyle changes to slow progression are just a few things you can do.

Confirming a Lewy Body Dementia Diagnosis

Lewy Body DementiaMany well-intentioned physicians misdiagnose Lewy Body Dementia as Alzheimer’s or Parkinson’s dementia because the symptoms of LBD can be similar.

However, an incorrect diagnosis can be devastating because, as Howard I. Hurtig, M.D., Chair, Department of Neurology, Pennsylvania Hospital, and member of the LBDA Scientific Advisory Council, states:

“While the symptoms of LBD may be similar to Alzheimer’s and Parkinson’s disease dementia, the treatment strategy is more challenging because fewer medications can be used safely.” Dr. Hurtig adds, “I cannot overemphasize the need to avoid medications that can worsen the symptoms of LBD. Every patient with this disease and their caregivers should be familiar with the list of acceptable and forbidden drugs.”

The Lewy Body Dementia Association has a wonderful publication, Lewy Who? which includes a helpful chart describing the difference in symptoms between those with LBD and their Alzheimer’s or Parkinson’s disease dementia counterparts.

If your loved one has been diagnosed with Alzheimer’s or Parkinson’s dementia, it’s worth reviewing these LBDA resources before starting any new medications in case LBD is the more accurate diagnosis.

Learning About Lewy Body Dementia

Education and communication are key to getting the care your loved one needs. The more you and caregivers understand about Lewy Body Dementia, the better.

In addition to the resources above, check out the LBDA, Learn About LBD page. Consider printing poignant portions of these pages for easy reference. It’s a wealth of information to digest but consider it a roadmap, helping you find your way along this complex journey.

Also, learn how effective lifestyle changes improve dementia outcomes, including:

Read Harvard U’s, Intensive LIfestyle Change: It Work… for more information.

Getting a Neurologist Referral for Lewy Body Dementia Treatment

Accurate diagnosis is key, as is early treatment action.

Seek a referral to a neurologist experienced in treating Lewy Body Dementia. There are medications known to alleviate certain LBD symptoms. There are also common antipsychotic medications that do more harm and exacerbate symptoms.

Work with an expert who’s up-to-date with the most current LBD research for optimized treatment.

Caring for Someone with Lewy Body Dementia

Caring For Someone with DementiaDuring the early stages of the disease symptoms are easier to manage. This makes it easy for loved ones to fill in the care gaps.

Although this is encouraged, these gaps and needs escalate at a more rapid pace as time elapses. As a result, caregivers often experience stress, depression, problems in their personal life and difficulty taking care of themselves. Caregiver stress is common and comes with hard-hitting consequences. Enlisting the help of care providers is a powerful step.

4 Tips for Lewy Body Dementia Care

1. Visit live-in care providers early to make an educated decision

If LBD is caught early, in-home care might make sense before the patient is transitioned to a memory care community.

Even so, schedule consultations and tours with prospective communities now. Not only does this give you time to process your decision, and learn more about what the future holds, it also provides the patient a greater sense of autonomy and choice in the matter.

2. Begin scheduling respite care opportunities

In the beginning, your life may only change a bit here and there, as you create new systems to navigate day-to-day life. However, things can snowball quickly.

Scheduling respite care opportunities allow you to remain more patient and compassionate when it’s your turn to provide care (and prevent caregiver burnout).

3. Use home care aides

If you opt to remain at home before transitioning to memory care, use a home care agency for tasks that are more challenging for you. This enables you to reserve your energy for the logistics, decisions, and emotional care required on a regular basis.

Home care aides can do the majority of the lifting, bathing, errand running, housekeeping and other tasks you may not have time for anymore.

The more you enlist the help of others’ support, the better able you are to care for your loved one.

4. Create an information & resource guide

Things may seem status quo for a while, but they can shift suddenly.

In order to ensure your loved one receives the care he or she needs, it’s important to be prepared and organized. Keep an emergency information packet on hand that includes:

  • An easy-to-read sheet, briefly explaining LBD, as well as any other medical conditions, for EMTs and/or care providers
  • A list of all of the current medications/dosages and contraindications, updated regularly
  • Copies of medical insurance cards
  • Copies of health care advance directives
  • Important contact information for neurologist/primary care providers, family, friends, neighbors, etc.

Planning for the Future with Lewy Body Dementia

Caring for someone with Lewy Body Dementia requires a balanced approach.

On one hand, it’s essential to plan for the future; on the other, it’s important to be present in the moment and take things day-by-day. Depending on your loved one’s symptoms and disposition, it’s critical to be flexible in terms of routine because things can change suddenly.

For example, those caring for someone with LBD find things go best when life moves at a slower pace, with fewer expectations and more flexible schedules. Things like art, music, gardening and sharing favorite foods may take precedence over other, more distracting activities.

Transitioning to Memory Care for Lewy Body Dementia

The temptation to put off the transition to a memory care center is understandable.

However, changes in routine and major transitions become more stressful as time goes on. Studies show that moving those in mid to later stages of dementia exacerbates their condition, compared to those who moved earlier and had more time to adjust to their new environment before dementia progressed.

Having a difficult time selecting the right memory care center for your loved one? Use this Checklist of Questions To Ask… to guide your decision.

Preventing Alzheimer’s Wandering

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People suffering from Alzheimer’s and dementia are prone to wandering, which can be extremely dangerous for the person and very worrisome for caregivers.

There are different reasons for wandering including boredom, fear, searching for something or trying to find a place from their past such as work or a childhood home.

Regardless of the reason someone wanders, caregivers should learn to identify the signs of wandering and know how to keep their loved one safe.

Warning Signs of Alzheimer’s Wandering

While not all wandering can be prevented, picking up on cues can often stop wandering before it starts.  Watch for signs such as:

  • Has To Be Somewhere – A person who insists it is time to go to work or pick up a child from school could be moments away from walking out the door
  • Boredom and Restlessness – Someone who isn’t getting enough exercise or stimulation can begin wandering simply to find someone to talk to or something to do
  • Needing To Find Something  – When someone with Alzheimer’s or dementia starts looking for a specific object or person they may wander off to find it
  • Basic Needs – Consider your loved one might be wandering simply because they want a drink of water at night or need to use the restroom

Pay attention to these cues and note the time of day. You may see a pattern emerge.

preventing wandering
Prevent Alzheimer’s Wandering

Preventing Wandering

Once you identify the signs of wandering you can make a plan to control the behavior more effectively and diffuse the situation.

If you notice wandering is happening during certain times of day plan an activity beforehand such as going for a walk together, playing cards or working in the garden.

You communication style can also make a difference.  If  dad becomes restless and decides it is time to leave for work don’t argue with him or remind him he retired years ago.  Instead try validating his feelings and re-directing him to another activity.  For example say “you’ve always been such a hard worker” then ask if he will help you fold the laundry.  Or acknowledge his need to get to work then ask him to tell you about his job. Talking about the memories might be all that is needed.

If wandering at nighttime is a problem make sure your loved one uses the restroom before bed or keep a spill proof cup of water next on the nightstand.  This may prevent wandering to the restroom or kitchen during the night for a drink of water.

Keep Them Safe From Wandering

Getting ahead of wandering behavior is important, but there additional safety measures you can take to keep your loved one safe.

  • Place locks high on the door or low to the ground where they are not in the person’s line of vision
  • Use childproof door knob covers or disguise the door by hanging a curtain over it or painting the doorknob the same color as the door
  • Keep trigger items like car keys and shoes out of sight
  • Create a safe place for wandering in the house or secure backyard free of trip hazards like cords or tree roots
  • Install a security system that alerts you when a door is opened, or simply place a wind chime or bell on the door
  • Consider an ID bracelet or a GPS monitoring system such as Medic Alert + Alzheimer’s Association Safe Return

About The Memory Center

Founded as the first assisted living facility devoted specifically to memory care, our program and communities are custom designed to meet the challenging conditions of an aging brain with a caring, interactive community.

We support not only our residents, but also their families encouraging them to stay involved and ask questions so they can rest easier knowing their loved one is safe, happy and receiving care they can feel good about.  Contact us for more information or read more about a typical day at The Memory Center.



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