Life is sweet at home

Basics of In Home Care Dementia Caregiving

Marla Beck

Many of us will either suffer from Alzheimer’s or from another form of dementia or serve as an in home caregiver to someone who suffers from these conditions. Maybe we will wear both hats?

If that is the case, many of us will want to arm ourselves for the probable. We will want to start learning about Alzheimer’s and dementia and how best to care for our loved ones and ourselves.

But before we look at some startling figures about how common these conditions are, let’s define what we are talking about.  As the Director of Care for Caring Companion Homecare in Concord, Mass. Deborah Bier, PhD, trains Alzheimer’s and dementia caregivers as well as coaches dementia affected families.

She defines dementia as “a group of symptoms that include memory loss, confusion and changes in thinking behavior. Alzheimer’s is one of the most common forms of dementia.”

In a special report, “2011 Alzheimer’s Disease Facts & Figures,” the Alzheimer’s Association published some amazing statistics:

* 5.4 million Americans of all ages have Alzheimer’s disease.
* 14.9 million people serve as unpaid Alzheimer’s caregivers
* 14 percent of people aged 71 and older in the United States have dementia.
* In the United States, we spend $183 billion annually on dementia.

Dementia Care: We all benefit from caregiving tips

Just as expectant mothers seek child rearing tips, many of us want to educate ourselves before our aging loved ones need dementia care. In this blog post, I will synthesize information from a number of sources about how we can increase our awareness and understanding of dementia caregiving.

As the founder and CEO of Andelcare, I have always been interested in and devoted to the care of the elderly and infirm Similar to many of my age mates, I am profoundly affected by the challenges of caring for my own family members with dementia. I know how difficult this transition can be for all of us, grown up children and our aging parents, as we travel the continuum from independence to in-home care.

Whether you provide most of your loved one’s care or utilize paid caregivers, please take a few minutes to review these tips and suggestions for taking care of your loved one with dementia and yourself.

5 Best-Kept Secrets of Dementia Care

In a recent webinar hosted by the Home Care Association of America,
Deborah Bier shared what she views as the “5 Best-Kept Secrets of Dementia Care.”

While Bier’s suggestions are hardly “best-kept secrets,” they serve as good reminders of how caregivers can affect the positive or negative “set” of the day.

Dementia care expert Bier defines dementia as “a group of symptoms that include memory loss, confusion and changes in thinking behavior. Alzheimer’s is one of the most common forms of dementia.”

Secret #1 – Dementia is a Disease, Not Normal Aging

Photo courtesy CSSChichester

Bier noted that there are aged people who do not get dementia. In normal aging, older people experience lapses in memory and loss of ability to follow directions or use tools or self care, but they eventually recall how to do all these things. With dementia the individual rarely remembers and is gradually unable to care for themselves.

To underscore that fact, one of her most dramatic visuals compared the brain at death of a non-dementia person and that of a dementia patient. The first brain weighed 3 pounds and the Alzheimer’s-affected brain weighed about 1 pound.

Secret #2 – Emotions of Dementia Sufferers Remain Intact

People with dementia feel all the normal emotions such as fear and anxiety and respond appropriately, said Bier. They also perceive others’ emotions and tend to mirror those feelings.

As a result, it is important to be careful what emotions the caregiver shows to patients. ‘You’ve got to be an actor and put on a sunny face,” observed Bier. “Otherwise, the dementia person may cling to a negative emotion all day.”

Secret #3 – Understand that People Suffering from Dementia Have Personal Preferences

It is very important to learn and respect an individual’s preferences for food, bath, dressing and activities. Instead of pushing convenience, Bier suggested that we start out the day with what they like. It relaxes the individual and paves the road for a smooth day. Also, getting to choose and to be in control of some portion of their life increases the individual’s self esteem and adds to feelings of value. As a result, they are often more cooperative.

Secret #4 – Non-Verbal Communication and Dementia

We are often unaware of our body language but the individual with dementia picks it up immediately. When caring for people with dementia, try to control negative postures such as rolling eyes, folded arms and other negative facial expressions.

“These individuals,” said Bier. “Are like little radar dishes trying to pick up hints. Emotions are contagious, so be careful to project the kinds of feelings and attitudes you want to see in the client.”

Secret #5 – Ways for Those Suffering from Dementia to be Independent Longer

According to Bier, we can change things in the physical environment to relieve the caregiver and to increase independence and self-esteem of the dementia sufferer. Here are just a few:

* Lighting – Dementia people need lighting more than twice as light as others.

* Colors – Those suffering from dementia need high contrast colors.

* Patterns – Don’t clutter up the scene in the dementia person’s living space.

* Arrangement – Order clothes first-to-last to help get dressed.

Here are cues and reminders for dementia care that seem especially helpful:

• Use LED lights to show the path to the bathroom.
• Close doors to rooms not needed
• Label drawers, closets, if they can read.
• Reduce “sun downing” by turning up lights, removing glare and removing long shadows.
• Changing clothes: take away dirty clothes immediately.
• Give two choices for outfits
• Lay clothes out with first items on top.
• Don’t criticize or correct, be patient, praise.

Mayo Clinic Offers Caregiver Tips

A short article by the Mayo Clinic staff echoes and reinforces some of Bier’s suggestions. To reduce frustration and increase dignity, the authors of the article “Alzheimer’s Care: Simple Tips for Daily Tasks” recommends limiting choices and reducing distractions.

Here are some of the article’s common-sense tips:

Schedule wisely. Dementia caregivers should establish a routine to make each day more predictable and less confusing. It also makes sense to schedule the most difficult tasks, such as bathing or medical appointments, for when your loved one tends to be most calm and agreeable.

Take your time. Whoa…slow down. This item reminds us to schedule more time to complete even simple tasks so that you don’t need to hurry.

Involve your loved one. As Bier noted in her webinar, invite and allow your loved one to be as independent as possible. For example, help your loved one dress alone by setting clothes out in the order they go on.

Limit choices. Bier talked about this one, too. Encourage simple “this or that” choices for the person with dementia.

Provide simple instructions. Break tasks down and give instructions one step at a time.

Reduce distractions. Here is a good reminder. Help your loved one focus more successfully by turning off distractions such as the TV during mealtime and conversations.

Be flexible – Things will change with loved ones who suffer from dementia so be ready to “go with the flow.” If they suddenly refuse to eat their former favorite food, try something else. Also, remember, you might consider relaxing your standards. For example, a sponge bath might work just fine in between baths.

Your loved one’s ability to function and cope will steadily decline. It may even vary from day to day. When caring for someone with dementia, it’s best that you stay flexible and adapt your routine as needed.

For example, a favorite food may suddenly become unappealing. That’s OK, simply adjust the menu. Or your loved one may insist on wearing the same outfit every day. If that happens, consider buying a few identical outfits. When your loved one is bathing, switch the worn outfit for a clean one.

You might also relax your standards a bit. Bathing, for example, may not be necessary every day — especially if it’s upsetting for your loved one. Try sponge baths between showers or tub bath

“Secrets” for Navigating Dementia Caregiving

Some of the most important “secrets” of dementia caregiving relate more to the care and feeding of family members and professional caregivers than to the loved one with dementia. In a recent article in Huffington Post Healthy Living, author Marguerite Manteau-Rao acknowledged the importance of understanding the needs of the dementia caregiver.

In her article “13 Essential Tips for Dementia Caregivers”, she emphasized a long list of tips designed to “save you a lot of grief as a caregiver of someone with dementia.”

Since, statistically speaking, more of us will be caregivers than recipients of dementia care; it makes just as much sense to learn more about how our friends and family can better take care of themselves when that time comes. In general, I find these suggestions appropriate for most anyone at most any stage of their life.

Summary of Dementia Caregiving Tips:

1. Start your day with a few minutes of sitting “mindfulness practice”, and end the same way.

Manteau-Rao says mindfulness practice, even for a few minutes a day, can reduce your level of stress. Your loved one will benefit from your centered calm. Basically, sit in a comfortable position and focus on your breath. Watch the ebb and flow and don’t worry about the thoughts that come and go. Return to your breath.

2. Incorporate mindfulness into your routines: walking, doing chores, caring for loved one, etc.

She recommends we incorporate this same mindfulness into our daily activities. As we slow down, we notice all the sensations and feelings in the present.

3. Practice recognizing and being with your emotions, including difficult ones.

Manteau-Rao states the obvious – that when caring for someone with dementia you are bound to experience many — and sometimes difficult — emotions: grief, anger, boredom, tiredness, fear, anxiety, frustration. She recommends a very powerful and simple practice. That is, acknowledge the emotion and its physical manifestations in your body. Ask yourself, “Is there anything I can do? Can I change my attitude?”

4. When you are the one caring for a loved one with dementia, practice loving kindness for yourself, and also for your loved one.

When the fear or the anger gets to be too much, counteract that negative energy with positive thoughts. Manteau-Rao says, “Think about someone, something or a place that is very dear to you. Feel the love and kindness emanating from your heart and send it to yourself.”

5. Share your mindfulness practice with at least one other dementia care partner.

When led into a sitting mindfulness practice for the first time, reports Manteau-Rao, caregivers almost always report feeling incredibly at peace and say they wish they could start their days in that way. It is much easier to add a practice to one’s routine if you do it with a group or other dementia care partner.

7. Share your joys and struggles with dementia caregivers and other care partners like you.

Caregivers need to struggle against the tendency to isolate by joining support groups, which often offer huge emotional relief in the sharing of your story. A good rule of thumb is this: The less you want to socialize, the more you need it for your own sanity and also the well-being of your loved one.

8. Get others to help you to care for a loved one with dementia.

If it takes a village to raise a child, it takes a whole care team to provide good care to a loved one with dementia. It is not humanly possible for a single person to do this, she observes, particularly as the years unfold and your loved one requires more and more assistance. If you are someone who has always prided herself in being self-sufficient, you will have to shift your attitude. Getting the help you and your loved one need is a sign of psychological strength. There are many who are there to help you: geriatricians, neurologists, geriatric care managers, nurses, home health agencies, other family members, physical therapists, psychotherapists, financial planners, volunteers, etc.

9. Get enough sleep, eat well and exercise.

It is just as important to nurture one’s physical well-being as to tend one’s emotional health.  Associated with the stress of dementia caregiving are conditions such as poor sleep, weight gain and depression, making dementia caregivers ripe for hypertension and cardiovascular disease. You need to remember that your physical health comes first. Make it a point of having only healthy foods in the home and of walking as much as possible.

10. Meet the person suffering from dementia’s five universal emotional needs.

Regardless of their cognitive, emotional, physical state, human beings all have five universal emotional needs: 1.) to be needed and useful, 2.) to have the opportunity to care, 3.) to love and be loved, 4.) to have self-esteem boosted, 5.) to have the power to choose. When caring for your loved one who suffers from dementia, make sure that each of these needs is being met.

Please share your hard-earned tips about how you care for a loved one with Alzheimer’s or dementia.  What works for you?