Depression can deepen over time for Alzheimer’s caregivers

SEP 12, 2020  7:50 AM

Add a heightened risk for depression to the list of challenges facing the caregivers of loved ones who have Alzheimer’s disease.

A new study found that older adults caring for spouses newly diagnosed with Alzheimer’s had a 30% increase in symptoms of depression compared to those whose spouses didn’t have Alzheimer’s or related dementia.

And with care often lasting for years and Alzheimer’s symptoms continuing to worsen, those caregivers can have sustained depression for a long period of time.

“We know there’s a lot of research out there on dementia and how it affects people diagnosed. But there’s not a lot of research out there looking at the emotional health of partners,” said study author Melissa Harris, a doctoral student at the University of Michigan School of Nursing.

She and her team analyzed data on 16,650 older adults from the University of Michigan Health and Retirement Study. They looked at depressive symptoms over an extended period, rather than for just a snapshot in time, as had been done in previous studies.

They considered individual symptoms, including feeling depressed, alone, sad and or that everything is an effort. Participants also answered whether they had felt happy in the past two weeks and whether they had felt like they enjoyed life.

“The fact that we saw these depressive symptoms stay for at least two years, beyond two years, means they’re taking a lot of the burden and it may be impacting the care they’re able to provide over time,” Harris noted.

The findings were published recently in the Journal of Applied Gerontology.

In separate research, Harris is interviewing family caregivers to see how their lives have changed because of the COVID-19 pandemic. Many resources and programs for the patient or the caregiver have been canceled or modified to be virtual, she said.

“They don’t get the same support and experience that they got before,” Harris said. “They described that the pandemic has really impacted their lives and their ability to care for themselves and also their loved ones.”

In the United States, more than 16 million family caregivers each provide an average of 22 hours of informal, unpaid care each week, the study reported.

Caregivers of people with Alzheimer’s disease experience many challenges, said Dr. Sanford Finkel, clinical professor of psychiatry at the University of Chicago. He is also a member of the Alzheimer’s Foundation of America’s medical, scientific and memory screening advisory board.

“There is the loss of companionship and the type of love of somebody you’ve been close to for many years,” Finkel said. “It’s the loss of who the person is as you’ve known them through the years.”

A person with Alzheimer’s disease has significantly diminished ability to nurture over time, while also having more needs, Finkel noted. As the disease progresses, the patient can have behavioral problems, including anger and aggression, as well as physical challenges.

“The demands on the caregiver are huge. Often people who are caregivers are people who are elderly themselves. They may have their own needs, their own emotional needs, their own physical needs, their own needs for intimacy, and so they’re getting a lot less coming in and they’re having to put out a lot more,” Finkel explained.

Getting help early can make a difference for the caregiver’s own health, Finkel said. He suggested calling the Alzheimer’s Foundation of America’s hotline, which is staffed by licensed social workers offering support and a connection to resources.

The Alzheimer’s Association also offers a variety of supportive programs, Harris said. This includes a 24/7 helpline.

Caregivers should also ask for help from their health care providers, friends, family and others with knowledge of caregiving, Harris said.

“Our findings have a lot of implications for clinicians,” Harris said. “It really demonstrates that we should be prioritizing the entire family.”

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No Respite? Valley Adult Day Services in need of financial help

An organization that provides respite for those diagnosed with Alzheimer’s or another form of dementia — and those who provide their care — is in jeopardy of closing its doors for good.

Valley Adult Day Services located at 227 E. Oak in the old Veterans Hall needs considerable financial help if its going to make it through the COVID-19 crisis. The facility closed for 2 ½ months during the COVID-19 pandemic but since has re-opened.

But the number of clients the facility can serve is still considerably limited due to COVID-19. Valley Adult Day Services executive director Kayla Muller said up to 30 clients a day were served by the organization before the COVID-19 pandemic hit.

She now said the organization serves 6 to 8 clients a day. “That’s not going to sustain us,” Muller said.

And if the organization has to close its doors again “the possibility of re-opening is almost non-existent,” said Muller about the operation re-opening after the COVID-19 crisis is over. “It would cause a financial burden on our program.”

So the organization needs funding to sustain it through the COVID-19 pandemic, Muller said.

The organization is limited to how many clients it can serve because of requirements such as face coverings and social distancing. But Muller admitted “there’s that fear of the virus” which has also caused a decline in clients.

The organization has obviously also been impacted by not being able to hold fundraisers due COVID-19. It hasn’t been able to hold its Rock-A-Thon, one of its major fundraisers. Proceeds from the Buck Shaffer Spectacular have also gone to the organization.

Muller said the organization is “trying to avenues of other fund sources to keep us going through” as far as raising funds to keep going so it can still operate when the COVID-19 pandemic passes.

The organization provides an Adult Day Program for adults age 18 years and older. Persons who are diagnosed as having Alzheimer’s or another form of dementia are eligible to participate without regard to age or financial resources.

The program is open 7:30 a.m. to 5:30 p.m. Monday through Friday. Clients who are served by the program receive physical and mental treatment to allow them to stay in their homes as long as possible. Clients do exercises and also do writing, reading and math.

But just as important the program gives the caregivers of those clients such as their family members a chance to take a break or to do other necessary tasks such as scheduled doctor’s appointments or picking up prescriptions.

Valley Adult Day Services is the only program of its kind in Tulare County.

In a letter asking for the community’s support, Muller wrote: “We are diligently attempting to maintain operations during this historic time in history. Along with many businesses attempting to maneuver through this virus, we are finding it difficult to provide the services we were able to provide prior to the pandemic. The ability to fund our program has been crippled by the fear of leaving one’s home, limiting the number of participates in the facility, and the costs of securing equipment and supplies for the health and safety of those participants that are attending.

“As a result, we are in a financial situation that could lead to the closure of our program. It is disheartening to be aware that a program that has serviced this community since 1989 will have to close due to spread of this virus in our country.

Muller went on to write: “We understand that times are hard and that everyone is in need. What we are asking currently is for your assistance to get us through,” Muller also wrote referring to when the COVID-19 pandemic will be over.

“We will need donations to help support our program through the next few months or we will be forced to close with little to no ability to reopen when this virus is no longer threatening our community.”

Bob Patel, one of the organization’s top supporters, has set up a GoFund Me page and a goal of $50,000 has been set to be raised. Those who wish to donate can visit:

Also for more information, visit or call 559-783-9815.




Also we do have a gofundme set up.

Any donation will help make an impact. Thank you in advance for your contribution to Valley Adult Day Services it means so much to us.

Donations are 100% tax deductible.

Our Donation Web Page

Please be aware our Donation page is up and running now.

Any donations to our organization are greatly appreciated.  Your donation changes lives.

Also your tax-deductible donations to Valley Adult Day Services do more than you can imagine to bring information and service to dedicated families who provide long-term care at home.

Coronavirus (COVID-19): Tips for Dementia Caregivers in Long-Term or Community-Based Settings

Emergency situations, such as the current COVID-19 pandemic, present special challenges to the delivery of Alzheimer’s and dementia care in long-term and community-based care settings, including nursing homes, assisted living, home health, home care and adult day care. People receiving care or utilizing services in these settings are particularly vulnerable to complications due to their age and other concurrent medical conditions.

Employees can also be affected in emergencies. Maintaining operations with the expected staffing shortages during any pandemic, epidemic or disaster can be very difficult. During this time, non-clinical staff may be needed to assist with care.

Caregivers in long-term or community-based care settings should consider the emergency preparedness guidelines from the Centers for Disease Control (CDC), in addition to the following suggestions for meeting the needs of persons living with dementia during a major disease outbreak or disaster.

Download the Association’s emergency preparedness guidelines for Alzheimer’s and dementia caregivers in long-term or community-based care settings.

Prevent illness during an emergency

Most likely, dementia does not increase risk for COVID-19, just like dementia does not increase risk for flu. However, dementia-related behaviors, increased age and common health conditions that often accompany dementia may increase risk.

Persons living with dementia may need reminders regarding:

  • Hand-washing and moisturizing. Caregivers should consider implementing a supervised hand-washing schedule.
  • Covering nose and mouth during a sneeze or cough.
  • Refraining from placing things in the mouth.
  • Staying in a particular area.
  • Taking medications appropriately.
  • Adopting social distancing practices and refraining from sharing items.
  • Following any other procedures that would require memory and judgment.

Provide person-centered care

As stated in the Alzheimer’s Association Dementia Care Practice Recommendations, one of the most important steps in providing quality dementia care is to know the person. In the event of a major disease outbreak or disaster, this may be more difficult for temporary staff members or those working in a new department or other health care setting.

It is recommended that a nurse, or social worker or staff under the supervision of licensed clinicians completes a HIPAA-compliant personal information form for each person and keeps it in an easily accessible place, such as inside a closet door in a folder attached to the back of a door.

Information on the form can include:

  • Individual’s preferred name (and pronouns); cultural background; religious or spiritual practices; and past hobbies and interests.
  • Names of family and friends.
  • What upsets the person and what calms him or her down.
  • Sleep habits; eating and drinking patterns and abilities; typical patterns of behavior; and normal daily structure and routines.
  • Remaining abilities, motor skills, verbal processing and communication abilities and methods.

Sharing information about a person living with dementia with the care team is very important in terms of providing quality, consistent and effective care. Given the care team may change frequently during a pandemic or disaster, briefing meetings at the start of the shift will allow the staff to share pertinent information about those receiving care.

Advance planning

Planning for the future is an important part of person-centered care, as it helps ensure that an individual’s wishes regarding treatment and care options are fulfilled.

  • Be aware of a person’s advance directives and ensure they follow the person if a transfer is necessary.
  • Ensuring individuals’ advance directives, Provider Orders for Life-Sustaining Treatment (POLST), and other documents are all up to date with current documented wishes, and physician orders are consistent with these wishes.

Help keep families and friends connected

Individuals living in long-term care and community-based dementia care settings may need help communicating with their families and loved ones during a crisis. Caregivers can help keep families and friends connected through a variety of methods, including:

  • Scheduling telephone or video calls to keep connected and/or encouraging families and friends to send notes and photos.
  • Developing a “What You Should Know” fact sheet to explain what families, friends and staff need to know in the event of an emergency.
  • Providing information about how families can receive updates or talk to a care provider about the person living with dementia.
  • Ensuring that adaptive devices are available to the individual where appropriate, e.g., hearing aids and eyeglasses.

Remember that each family is unique. For some people, their closest supporters may not be biological or legal family members, but friends or community members.

Assist with eating and drinking

Especially when there is risk of contracting a virus, it is important for persons living with dementia to maintain their strength. Strategies to assist individuals with eating and drinking include:

  • Staff should familiarize themselves with the person’s eating and drinking patterns and abilities. He or she may need to be reminded or prompted to drink and eat as they might not be able to recognize hunger or thirst.
  • Verbal, visual or tactile cues such as high contrast dinnerware, adaptive utensils, graded approaches and modeling behavior may encourage individuals to eat and drink.
  • Sitting and talking with the person with dementia during meal times may improve intake.

Any evidence of difficulty in swallowing should be assessed by appropriately licensed clinical staff. Licensed or trained personnel should assist and monitor all persons with dementia who have been identified as having a choking risk or a history of swallowing difficulties.

Monitor walking and unsafe wandering

Walking is a purposeful motor activity that promotes mobility and strength building. Unsafe wandering occurs when a person living with dementia gets lost, intrudes into inappropriate places or leaves a safe environment. The risk for unsafe wandering may increase when the person becomes upset, agitated or faces stressful situations, which may become more common in emergency situations.

Possible interventions include:

  • Provide persons with dementia safe spaces to walk about.
  • Secure the perimeter of areas, if possible.
  • Ensure that persons with dementia get regular exercise.
  • Provide structured activities throughout the day.
  • Spending time outdoors in a safe environment.

Observe and respond to dementia-related behaviors

Nonverbal dementia-related behaviors may be an option or response for a person living with dementia to communicate a feeling, unmet need or intention. These behaviors are triggered by the interaction between the individual and his or her social and physical environment. A response may include striking out, screaming, or becoming very agitated or emotional. The dementia care provider’s role is to observe and attempt to understand what the person living with dementia is trying to communicate.

Root causes of dementia-related behaviors may include:

  • Pain.
  • Hunger.
  • Fear, depression, frustration.
  • Loneliness, helplessness, boredom.
  • Hallucinations and/or overstimulation.
  • Changes in environment or routine.
  • Difficulty understanding or misinterpreting the environment.
  • Difficulty expressing thoughts or feelings.
  • Unfamiliarity with personal protective equipment or clothing, such as gowns or masks.

Strategies to observe and respond to dementia-related behaviors include:

  • Rule out pain, thirst, hunger or the need to use the bathroom as a source of agitation.
  • Speak in a calm low-pitched voice.
  • Try to reduce excess stimulation.
  • Ask others what works for them.
  • Validate the individual’s emotions. Focus on the feelings, not necessarily the content of what the person is saying. Sometimes the emotions are more important than what is said.
  • Understand that the individual may be expressing thoughts and feelings from their own reality, which may differ from generally acknowledged reality. Offer reassurance and understanding, without challenging their words, can be effective.
  • Through behavioral observation and attempted interventions, try to determine what helps meet the person’s needs and include the information in the individualized plan of care.
  • Be aware of past traumas (veterans, abuse survivors, survivors of large-scale disasters).
  • Never physically force the person to do something.

For more strategies and interventions, download the Alzheimer’s Association emergency preparedness guidelines for Alzheimer’s and dementia caregivers in long-term and community-based care settings.

Assessing the need for pharmacological treatment

If non-pharmacological practices are not effective after they have been used consistently, then medications may be appropriate when individuals living with dementia have severe symptoms or have the potential to harm themselves or others. Continued need for pharmacological treatment should be reassessed as required by the medication regimen or upon a change in the person’s condition.

Proactive strategies for addressing dementia-related behaviors

It can be difficult to anticipate and respond to dementia-related behaviors in a changing environment — especially in emergency situations. However, applying some of the following strategies may help:

  • Provide a consistent routine.
  • Use person-centered care approaches for all individuals living with dementia during activities of daily living — every interaction or task is an opportunity for engagement.
  • Promote sharing of person-centered information across the care team.
  • Encourage all staff to treat individuals living with dementia with dignity and respect.
  • Put the person before the task.

COVID-19 resources from the CDC

Crises can be challenging, especially for individuals living with Alzheimer’s and all other dementia. With some careful planning and attention to the unique needs of those receiving care, professionals may feel more empowered to respond quickly and appropriately to support individuals living with dementia.

We updated our on Facebook page

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Caregiver 101

Caregiving 101
By Michael Plontz

A family member has just been diagnosed with an illness that will eventually require round-the-clock care. Of course you want to be the one giving that care. This decision is usually made without hesitation; of course we want to be our loved one’s caregiver. Who else could take better care of them? However, when the reality of your decision sinks in, your head will be swimming with uncertainty, anxiety, and maybe even fear. Certainly you will have many questions. Welcome to Caregiving 101, a primer for first-time caregivers.

First of all, arm yourself with knowledge. An old maxim states that “Knowledge is power,” and it’s true. Knowledge will empower you to take the best care of your loved one and yourself. Learn all that you can about your loved one’s condition, illness or disease. There are local branches of national organizations like the Alzheimer’s Association and the Cancer Society all over the country. Use them as a tool to find out all about your loved one’s present condition and what the future may hold for both of you.

Another reason to learn is to take better care of your loved one. You may educate yourself through health care manuals, books and videos. The Internet is also a good source of information, but navigate carefully through that material because not all of it is valid. Also, ask lots of questions of your health care professionals. They are the best people to show you proper techniques like transferring, lifting and bathing. When you learn all that you can, you will be more confident in your caregiving abilities.

Caregiving can be an isolating experience, so it’s helpful to talk to others who are, or have been, in your shoes. You will feel that you are a part of a growing community of caregivers. You may also learn about options and community resources that you were not aware of from other caregivers. These people can also help with difficult decisions concerning your loved one. Determining your responsibilities will probably be one of the first things you struggle with, so talk to others who’ve been there before.

You must remember to take regular breaks from your caregiving responsibilities. You can’t be good to someone else if you’re not good to yourself. Use your relatives. They can help in several ways—financially, socially, and as respite support. If relatives are unavailable or do not exist, try community services like a volunteer group at your local church. Try and follow these guidelines for caregiving breaks: take half-an-hour a day to practice yoga, meditation, needlepoint, reading, etc.; spend a couple of hours a week away from the house at the mall, coffeehouse, library, etc.; monthly you should have an evening out with friends, go to a play or concert, etc.; on a yearly basis you should go on a well-planned (and well-deserved) vacation. These guidelines will help in avoiding “caregiver burnout.”

Your community most likely has organizations about which you never gave a second thought until now. These may include, but are not limited to, Meals on Wheels, day care centers, and home care agencies. If applicable, contact your local Area Agency on Aging for a list of services and organizations. Your local medical supply store may have gadgets and devices to enhance your loved one’s abilities, at the same time making your life a little easier. You might also inquire about local, state or federal programs that might provide financial aid for you and your loved one. As needs increase, so do costs. Understanding which programs can help and what you can afford, will allow you to plan for the future.

One way to deal with the emotional roller coaster you may experience is to get your feelings down on paper. Some journal entries might address the following subjects: How do you feel now? What are your fears and/or concerns? What outcomes would you like? What losses have you noticed so far? What changes in your relationship with your loved one have cause you to feel sad? What changes have given you comfort? Journaling is a healthy way to put your feelings “out there” and to possibly alleviate some of the anger, frustration and helplessness you may be feeling.

Caregiving need not be a lonely and emotionally debilitating experience. According to the latest statistics on caregiving for the National Family Caregivers Association, nearly half of the U. S. population has a chronic condition. From that number 41 million are limited in their daily activities while 12 million are unable to live independently or even leave the house. One can deduce from these numbers that there are millions of family caregivers out there. So keep in mind that you are not alone, and best of luck to you and your loved one.