Dementia and Caregiving Challenges

You probably know that caring for a loved one with dementia won’t be easy, but these sometimes embarrassing and unfamiliar behaviors might drive you nuts.

Dementia and Caregiving Challenges

  • Dementia Sleep disorderSleep problems and caregiver exhaustion are two of the most common reasons persons with dementia are placed in nursing homes. Causes of sleeplessness in dementia patients include pain, lack of exercise and activities, anxiety, agitation, or too much fluid or caffeine late in the day.
  • Urinary incontinence is the second leading reason that families institutionalize their loved ones with dementia. Urinary incontinence in persons with dementia should be evaluated for treatable causes, including urinary tract infections, electrolyte and calcium abnormalities, prostatic hypertrophy, and estrogen deficiency. A regular toileting schedule at two to three-hour intervals or verbal prompting may also alleviate this symptom.
  • Agitation and aggressive behavior have been reported in 65 percent of community-dwelling persons with dementia. Reasons for agitation or aggression include overstimulation, physical discomfort, unfamiliar surroundings or persons, complicated tasks, and frustrating interaction, as well as more serious reasons as paranoia, delusions, or hallucinations.
  • Caregivers may be embarrassed or ambivalent about discussing inappropriate sexual behaviors exhibited by persons with dementia.
  • Persons with dementia are often reluctant to stop driving when safety is at issue.
  • Repetitious questions may be due to short-term memory loss and an under-stimulating/over-stimulating environment leading to anxiety, feeling out of control, or fear.

Also see:

Information for this blog cited from the Alzheimer’s Association and the American Medical Association

Written by Author and Keynote Speaker Sue Salach-Cutler. Sue has a Master’s degree in Gerontology and has worked in the healthcare field for over 25 years.  She is the Author of “Along Comes Grandpa”, a caregiving resource guide, and the novel “If I Walked in Her Shoes”. Her programs and books provide the vital resources needed to help family caregivers as they maneuver through the caregiving journey. Find out more about her books and programs here: CaregiverLife.com.  Adapted from: https://theworkingcaregiver.org

What is a Health Directive for Dementia?

People with advancing dementia lose the ability to make decisions for themselves. Their families need to make medical decisions for them. Giving family members guidance about what kind of care you’d want if you were to develop worsening dementia can ease the burden of their decision making and make you feel more secure that you’ll receive the care that you would want.

Following our articles on Late Life Depression, Late-onset Depression and Dementia, and Practical Advice on Caring for an Adult with Dementia, here is a Dementia-specific Advance Directive download that allows you to map out your care and medical intervention plan should you or a loved one become ill with dementia in the future.

Late Life Depression, Late-onset Depression and Dementia

Can you develop depression when you are past some of the most stressful times of life?

LLD is caused by the underlying neurological changes in the brain

So, you’ve raised your children, achieved success in a career and now you’re considering downsizing and finally, retirement. But, you don’t feel quite like yourself. You tell yourself, “I should be happy, but I’m not.” You don’t enjoy things like you used to, you lack energy and engagement with others, and your appetite is poor and you’re not sleeping well. Maybe you’re moving a little slower and not as quick to solve problems or remember things you’re supposed to do. What could be wrong?

You see your physician, who is all too familiar with this condition, and sends you for a neuropsychological evaluation, which reveals that you are suffering from Late Life Depression (LLD). You protest, “I’ve experienced sadness like everyone else, but I’ve never been depressed in my life!” So, what is LLD?

This diagnosis is not to be confused with late-onset depression, which means, more simply, that a typical clinical depression develops later in one’s life. Confused? What differentiates LLD is the underlying neurological changes in the brain. Both are treatable, but LLD has greater implications for more serious, long-term health concerns like dementia.

LLD is defined with an age threshold of 60. Approximately 10 percent of the 60-and-over population is estimated to suffer from LLD in the United States. There is considerable reduction in discrepancy between genders in this population since middle-aged females already suffer from depression at higher rates. If you have chronic illness such as a myocardial infarction or stroke, chances are greater that you will develop LLD.

A key feature of LLD is often the presence of cognitive deficits in meaning, memory, organization, planning, and reasoning, to a degree greater than that expected for your age. Generally, LLD is more difficult to treat than Late-onset Depression, and relapse rates are higher. Furthermore, those with LLD are more likely to age into dementia. See Practical Advice on Caring for an Adult with Dementia.

Differentiating these two types of depression is imperative for accurate diagnosis, prognosis and treatment. If you or a loved one are experiencing these symptoms, a neuropsychological evaluation may be warranted and recommended.

About the Author

Jennifer Wilson-Binotti

Compassionate Neuropsychology, LLC
Neuropsychological Assessment with a Human Touch
Jennifer Wilson-Binotti, Psy.D.
Licensed Clinical Psychologist
Clinical Neuropsychologist
www.compassionateneuropsychology.com

Dr. Wilson-Binotti has worked with older adults since 2012 during her post-doctoral training in Downstate Illinois. She has experience working with those aged 50+ who have increased anxiety or depression, or a decline in functional or cognitive (thinking, memory) abilities. She previously served over 20 nursing/rehab/long-term care facilities and was on staff at six suburban hospitals, remaining on staff at Edward and Linden Oaks Hospitals in Naperville, IL. Currently, she sees patients at nursing facilities and in private residences when seniors are no longer able to physically leave their homes.

Her relaxed and warm demeanor helps patients feel comfortable and perform their best during neuropsychological testing. Many patients have described their experience with Dr. Wilson-Binotti as “fun,” and some even look forward to doing it again!

Recognizing the Signs of Caregiver Burnout

You try to hide the feeling of being overwhelmed, however; caregiver burnout is serious and can lead to significant physical and mental health issues.  It is critical to know the signs and take steps to take care of yourself.

Here are some signs of caregiver burnout:

  • Overreacting to minor frustrations
  • The constant feeling of exhaustion
  • Loss of interest in things you use to enjoy/ isolation from social gatherings
  • Decreased work productivity
  • Increased use of alcohol/stimulants
  • Change in eating or sleeping patterns
  • Scattered thinking
  • Feelings of resentment towards the person you are caring for
  • Being short-tempered with family members

If you see yourself in any of these points you need to make some drastic changes NOW before it becomes critical.

Some Self-Care Tips:

Seek Help Emotionally:

Support group

Group therapy

Though it seems that you have no time to add another thing to your calendar it is important to make the time Group participants will understand how challenging the caregiving journey is and how hard it is, at times, to remain patient with the mental and physical decline of someone you love.  As well as how frustrating it is trying to “navigate the health care system”.

Get an “on-call” friend

Ask someone in your close circle of friends to act as a sounding board (sometimes just a venting board) so you can release the pent-up emotions without concern of judgment or criticism.

Journal/Blog

Sometimes writing things down can help you express your emotions. Sharing your emotions via a blog can help others in realizing they are not alone in their struggles with their care journey.

Consider counseling

This can assist you in dealing with the natural feelings that come with caregiving. Among these are anger, frustration, sadness, anxiety, and guilt. Some feelings are part of the grieving process you and your care receiver are experiencing. Unfortunately, many caregivers don’t take time for counseling until their caregiving days are over. (If you are a working caregiver, counseling may be provided as part of your health insurance package, so call your health insurance provider. Companies offering Employee Assistance Programs (EAP’s), may also cover counseling. Caregivers aged sixty or over may qualify for counseling under the Older Americans Act, Title III-B.)

Seek Help Physically:

Ask for help

If you have other family members in the area, call and ask them to help you with the care needs. Then LET THEM DO IT! Let go of the need to control because it is part of the cause of your burnout.

Respite Care

If you care for someone in a home setting you can hire a caregiver to come to the home to manage their care for a week or two. Consider scheduling a respite stay at an assisted living or skilled nursing facility.

Get a physical

Schedule an appointment with your doctor for a complete physical and KEEP IT. Though caregiver burnout feels more like an emotional issue, it can lead to serious health issues if left unmanaged.

Get away

Take a vacation, even if it’s just for a weekend or an overnight stay somewhere away from your regular hectic schedule.

Find ways to take care of yourself TODAY!  Putting it off will only continue the downward spiral which can lead to critical, life-altering decisions and behaviors. Read more about the Impact of Being the Caregiver.

takecontrolPlease note: If you are feeling overwhelmed and are afraid you will hurt your care receiver if you don’t find help right away(800) 971-0016 is a twenty-four hour crisis and information line.

Written by Author and Keynote Speaker Sue Salach-Cutler. Sue has a Master’s degree in Gerontology and has worked in the healthcare field for over 25 years.  She is the Author of “Along Comes Grandpa”, a caregiving resource guide, and the novel “If I Walked in Her Shoes”. Her programs and books provide the vital resources needed to help family caregivers as they maneuver through the caregiving journey. Find out more about her books and programs here: CaregiverLife.com.  Adapted from: https://theworkingcaregiver.org

Practical Advice on Caring For a Parent with Dementia

Mental Health CareWhen a diagnosis of dementia is made, the physician is pivotal in providing the knowledge and resources that are needed to care for the patient. Because family members provide the majority of care for persons with dementia, they are an essential resource for the patient and the health care system. Making sure physicians who are overseeing medical care for your loved one understand your needs as a family caregiver and the challenges you face are essential aspects of caring for the person with dementia. A physician/caregiver/patient relationship is the recommended approach for meeting the needs of both you and your loved one.

Dementia Caregiving and the Health Care System

Physicians can provide a proactive approach to support by providing you with information about dealing with your loved one’s dementia symptoms, and linking you with resources (e.g., the Alzheimer’s Association). This can improve your capabilities as a caregiver and lead to more successful and enduring caregiving.

Make sure your loved ones’ physician:

  • Works collaboratively with their other physicians, nurses and/or social workers who are knowledgeable about symptom and behavioral management strategies;
  • Understands that you are physically, emotionally, and financially vulnerable;
  • Understands that to be an effective and knowledgeable caregiver, you often rely on physicians to provide information about dementia symptom management and the availability of support services.

5 Steps Caregivers can take to Prepare for Dementia Care Problems

Dementia and the Health Care System

Because dementia is a deteriorating condition that develops over an extended period of time, care problems can be anticipated and planned for well in advance. Use these tips to get started:

  1. The physician can help family members anticipate changes, plan for role transitions, and arrange for education and support that is needed to provide care.
  2. In the earliest stages of the disease, it is helpful for caregivers to identify a health care proxy for the person with dementia. Encourage the completion of a Durable Power of Attorney for Health Care form (your physician should have copies available in their office.) The copy of completed forms becomes part of patient’s record. (See What is a Health Directive for Dementia? for a downloadable dementia-specific health care form.)
  3. Caregivers need to maintain their personal health and vitality to provide continuing care for the demented patient. (see Recognizing Caregiver Burnout and Dementia and Caregiving Challenges).
  4. Caregivers should become familiar early in the illness with adult day-care services and in-home or in-facility respite services.
  5. It is helpful for caregivers to visit and evaluate several long-term care facilities well ahead of the need for placement. Understand that institutionalization may be a normal progression in the process.

Information for this blog was cited from the Alzheimer’s Association and the American Medical Association.

Written by Author and Keynote Speaker Sue Salach-Cutler. Sue has a Master’s degree in Gerontology and has worked in the healthcare field for over 25 years.  She is the Author of “Along Comes Grandpa”, a caregiving resource guide, and the novel “If I Walked in Her Shoes”. Her programs and books provide the vital resources needed to help family caregivers as they maneuver through the caregiving journey. Find out more about her books and programs here: CaregiverLife.com.  Adapted from: https://theworkingcaregiver.org

Ask Yourself These Proactive Caregiving Questions Today to Prepare for the “What ifs?” in Life

“I wish I had met you a few months ago.” I hear some variation of this phrase weekly from people I meet through both networking and personal events.  The comment comes from people who have experienced family caregiving in some form and had no idea what resources were available to assist them or the person they were caring for.

At some point in our lives we have either been, will be or know someone who is the caregiver of an elderly relative. Depending on our life expectancy, we will also become the elderly person in need of resources.  What happens when caregivers have to make decisions with no per-conceived notion of the available resources or when they have to make decisions in reaction to a crisis?

All decisions made from the point of the “incident”, the “fall”, “hospitalization”…you fill in the blank, are done in reaction to the situation.  These very important, potentially life altering decisions are based primarily on an emotional response to the event or the direction given by a medical professional.  Regrettably, reactionary caregiving decisions may not be the best option and may contradict the person’s wishes.

Now I realize that in our busy world, if something isn’t happening immediately, we don’t really have the need to know about resources available for the “what if’s” in life. Unfortunately, neglected “what if” planning can lead to reactionary caregiving decision-making when a crisis strikes.

The good news is it doesn’t have to be that way.  There are caregiving preparations that can be made TODAY for the “what ifs” in life.

Ask yourself and those you love these proactive “what if” questions and begin preparing for potential crisis:

  • What if I cannot make decisions for myself?
  • What if I needed long-term nursing care?
    • Would I want that in home or in a facility?
    • What would be my personal guidelines to determine where the care was given?
  • What if I need short-term rehabilitation?
    • Where would I want to go for that care?
  • What if I could no longer manage my finances?
    • Who would I trust to manage them for me?
  • What do I need to have in place to make sure that if one of my “what if’s” happened, my family would know what I wanted done?
  • What if (Fill in the Blank)

I know that asking these questions can be awkward; however, if and when the crisis strikes, you’ll be glad you did.

For more resources visit – AlongComesGrandpa.com

Written by Author and Keynote Speaker Sue Salach-Cutler. Sue has a Master’s degree in Gerontology and has worked in the healthcare field for over 25 years.  She is the Author of “Along Comes Grandpa”, a caregiving resource guide, and the novel “If I Walked in Her Shoes”. Her programs and books provide the vital resources needed to help family caregivers as they maneuver through the caregiving journey. Find out more about her books and programs here: CaregiverLife.com.  Adapted from: https://theworkingcaregiver.org

This Job Sucks! Choosing the right Power of Attorney is imperative

Sibling Power of AttorneyWhile visiting with a friend who just lost his sister, he shared how difficult it was for him because his sister had chosen him (above her parents, children and other siblings) to be her Power of Attorney (POA). His sister was in the final stages of cancer when he had to make some very difficult decisions about her care at the end. Having spoken with her at length about what she did and did not want done to prolong her life, he followed her wishes and made decisions accordingly, which meant not approving a procedure that would have been very painful and would have done little to change the outcome of her prognosis.

Those who have never had to make potentially life/death decisions cannot imagine the strength it takes to make these types of choices, even if it is following the directions of your loved one to the letter.

As I have shared in my speaking and blogging, choosing a POA (and making sure it is the right person for the job) is imperative. (See What is a Power of Attorney?). However, being named as the “chosen one” has its burdens as well.

Here are just a few:

  • You may question why you were picked and wonder if you are the best choice;
  • Others may question why you were picked, thinking they would have been a better choice;
  • Knowing the right time/situation to step in to help someone in making difficult health-care decisions isn’t easy;
  • You need the strength to make difficult decisions IN SPITE OF your emotions and/or the emotions of other family members; and
  • You need the courage to make difficult decisions IN SPITE OF the criticism of those around you.

Sounds daunting but have heart; there is hope.

Family WishesHere are some steps you can take to encourage the person who has chosen you as the Power of Attorney, and to make the job a lot easier for yourself:

  • Have a very direct and serious conversation about what they want/don’t want in certain situations. Use these Proactive Questions as a starting point.
  • Ask them to write down in DETAIL what they would or would not want if certain situations were to arise (helpful tool – 5 wishes)
  • Ask them to share their decision to choose you with other family members (family conflict can arise when someone else thinks they are in charge, only to realize they were not the “chosen one”),
  • Respect your family members’ wishes by asking them to write them down in detail so you can follow their instructions and include them in the caregiving process.
  • Make sure that everyone in the family understands that this was their decision and that this is not about “favorites”, it is about who THEY FEEL is able to manage the care in the fashion requested by the assignee.

Important point!!

**Just because someone asks you to be his or her power-of-attorney does not mean you have to say “yes”.

You must be willing and able to follow their wishes IN SPITE OF your own thoughts, feelings or emotional connection and have thick skin and an unwavering spirit to face the potential hostile response/criticism that may come from other family members. If you do not think you can do that, you should be honest with them and graciously decline and share the reasons.

Written by Author and Keynote Speaker Sue Salach-Cutler. Sue has a Master’s degree in Gerontology and has worked in the healthcare field for over 25 years.  She is the Author of “Along Comes Grandpa”, a caregiving resource guide, and the novel “If I Walked in Her Shoes”. Her programs and books provide the vital resources needed to help family caregivers as they maneuver through the caregiving journey. Find out more about her books and programs here: CaregiverLife.com.  Adapted from: https://theworkingcaregiver.org

What is a Power of Attorney?

Power of AttorneyMedical Power of Attorney (POA) is something each of us, no matter our age, should have. Frequently, people grant POA to their spouse, children or siblings. POA goes into effect only if you are not able to make competent decisions. Not when the POA doesn’t like or agree with the decisions you are making.

*It is crucial to choose someone you trust and discuss what you do and don’t want done in certain circumstances (i.e. removing life support).  Confirm they are willing to following YOUR wishes in spite of their feelings at the time the decisions have to be made. When someone has been granted the POA for another, they have an ethical responsibility to act in good faith on behalf of the person. (Read This Job Sucks! Choosing the right Power of Attorney is imperative

What is a Medical POA?

It is a document, signed by a competent adult, i.e., “principal,” designating a person that the principal trusts to make health care decisions on the principal’s behalf should the principal be unable to make such decisions. The individual chosen to act on the principal’s behalf is referred to as an “agent.”

What happens if I do not have a Durable Power of Attorney for Health Care?

If you do not have a Durable Power of Attorney for Health Care and are physically or mentally unable to tell your doctors what you want, the following people, in order of priority, are legally authorized to make your health care decisions for you:

  1. Your court-appointed guardian or conservator (Read What is the Difference between Guardianship and Power of Attorney?);
  2. Your spouse or domestic partner;
  3. Your adult child;
  4. Your adult sibling;
  5. A close friend; or
  6. Your nearest living relative.

When does the POA have the right to make health care decisions on my behalf?

A POA can make health care decisions for you only if your attending physician certifies in writing that you are incompetent, some states may require 2 physician certifications. The physician must file the certification in your medical record. Usually the POA authority will take over in situations where you suffer from advanced dementia, permanent disability or experience a dramatic mental decline.

The process to appoint your POA should be done before competency is questionable. As long as you can make decisions for yourself, there is no need for a power of attorney.

Can the agent make a health care decision if I object?

No. Treatment may not be given to or withheld from you if you object. This is true whether or not you are deemed incompetent.

What health care decision-making power does the POA grant to an agent?

The POA can make arrangements for doctor visits, treatments, medications, tests and surgeries if needed. It also gives the agent the power to make decisions about life support.

However, an agent cannot consent to:

  • Commitment to a mental institution
  • Convulsive treatment
  • Psychosurgery,
  • Abortion, and
  • Neglect of comfort care.

In the POA document itself, you may limit the agent’s decision-making authority. The POA agent can be changed at any time by simply tearing up the old form and filling out a new one. Many states do not require a lawyer or notary to update the forms so check what the requirements are in your state.

**This post is meant to share basic information about POA laws in order to get you to think pro-actively about potential future care needs and those whom you would want in charge of your care.  Laws vary from state to state, so it is important that you consult with an attorney near you on the scope and range that a medical power of attorney contract has for you.

References: Texas Medical Association & AgingCare.com

Written by Author and Keynote Speaker Sue Salach-Cutler. Sue has a Master’s degree in Gerontology and has worked in the healthcare field for over 25 years.  She is the Author of “Along Comes Grandpa”, a caregiving resource guide, and the novel “If I Walked in Her Shoes” Her programs and books provide the vital resources needed to help family caregivers as they maneuver through the caregiving journey. Find out more about her books and programs here: CaregiverLife.com.  Adapted from:https://theworkingcaregiver.org