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An Online Handbook: Caring for Your Loved One with Alzheimer’s Disease

It is one of the most difficult times to go through when a loved one is diagnosed with dementia or Alzheimer’s. As a caregiver, it is important to educate yourself on the disease, proper care, and general tips to know. You can read through our guide that McKinney Senior Living Specialists wanted to provide for free to those needing guidance. If you have more questions or need an assisted living advisor, please contact McKinney Senior Living Specialists today!.

Table of Contents

Section 1: Introduction and Our Story

  • Paul Markowitz and His Personal Story
  • Realizing There Aren’t Many Resources Out There

Section 2: What Do You Do After Diagnosis?

  • Understand the Diagnosis
  • Facts About The Disease
  • Explaining to Friends, Family, and Children

Section 3: Long-Term Planning

  • Getting Affairs In Order
  • Power of Attorney and Legal Affairs
  • Safety Deposit Box

Section 4: How To Live Well With Alzheimer’s

  • Socialization
  • Exercise and Wellness
  • Nutrition

Section 5: Needing Additional Care

  • Role of a Senior Care Advisor
  • Types of Care
  • Care Considerations

Section 6: Take Care of Yourself

  • Caregiver Burnout

Section 1: Introduction

Paul’s Story

Alzheimer’s is often called a family disease because the emotional stress of watching a loved one’s memory slowly decline as they pass through the stages of the disease affects everyone. It is an experience Paul Markowitz, the Founder of Senior Living Specialists, and his family can relate to when his mother, Betty, was diagnosed with Alzheimer’s at the young age of 59.

After such a distressing diagnosis, Paul immediately became a caregiver of his mother. But like so many others, he didn’t know where to begin. Paul soon learned that caring for his mother meant providing a safe environment at home, managing difficult behaviors, and assisting with day to day activities.

He realized his mother needed more care than he could provide, so he began searching for a senior living provider. But again, he hit a roadblock in determining which type of care facility would be the right place for his mother.

After his extensive search, Paul realized that there must be a better way to connect families with the senior living information and resources they need. Paul’s experience is what led him to start Senior Living Specialists in 2009. Since then, Paul and his team have helped more than 2,000 families in the North Texas area find senior living care. This handbook is based on Paul and his team’s first-hand knowledge and experience.

Section 2: What’s Next?

If your loved one has been diagnosed with Alzheimer’s, you and your family may be experiencing an overwhelming range of emotions including disbelief, anxiety, and grief. Because the disease can be life altering for your loved one and your family, it is only natural for you to be experiencing these feelings. Take your time to fully digest your emotions. Find healthy ways of coping like having a family discussion, journaling, joining a support group, or seeking the help of a counselor.

Understanding the Diagnosis

Knowledge is power. Perhaps one of the best ways you can start to care for your loved one is to educate yourself. There are an infinite amount of resources you can use to learning about Alzheimer’s Disease including books, articles, consulting with professionals, and participating in support groups. Here are a few places to start:

  • Alzheimers.gov: Information on treatment options, medicare coverage, and local referrals compiled by the U.S. Department of Health & Human Services
  • National Institute on Aging: (Alzheimer’s Disease Education and Referral Center) – Current resources and Alzheimer’s information. Includes information on clinical trials.
  • Family Caregiver Alliance: Information and resources for those caring for people with disabling health conditions.
  • National Caregivers Library: Articles, resources, checklists, and links for caregivers.

While doing your research might mean facing some harsh realities, it will prepare you and your family for what’s to come and how you can properly care for your loved one.

Fast Facts

Learning as much as you can about Alzheimer’s is a step toward caring for both you and your loved one. Particularly, you may experience a stronger connection and the ability to make more informed decisions on their behalf. Here are some fast facts about Alzheimer’s:

  • Alzheimer’s is a progressive disease that destroys memory and other mental functions.
  • It is estimated that more than 5 million Americans suffer from Alzheimer’s.
  • It is the 6th leading cause of death in the United States.
  • Alzheimer’s worsens over time. In its early stages, memory loss is mild, but as the disease progresses into later stages, a person is unable to carry on a conversation or understand his or her environment.
  • According to The Alzheimer’s Association, more than 15 million Americans provide unpaid care for people with the disease. And, in 2016, caregivers provided an estimated 18.2 billion hours of care valued at over $230 billion.
  • While there is no known cure, Alzheimer’s is at the forefront of biomedical research. As a result, doctors and scientists have made medical advancements in the form of medication for memory loss, therapies for Sundowners syndrome symptoms, and treatments for sleep changes.

Talking to Family and Friends

Talking to children about Alzheimer’s can be a particularly sensitive conversation as it is more difficult to understand what the disease entails. It can cause confusion, frustration, or sadness for children when the person they have known and loved is experiencing memory loss and other Alzheimer’s symptoms. Here are a few things to keep in mind when talking to children about Alzheimer’s:

  • Talk in simple terms. You might say that their loved one has an illness that causes them to forget things easily.
  • Allow them to ask questions and answer them honestly.
  • Express that the child did nothing wrong. It isn’t their fault that their loved one has this illness.
  • Tell them that their feelings are normal and encourage them to talk to you about them.
  • The illness is not contagious. They can still be around their loved one without getting sick.

Section 3: Long-Term Planning

As Alzheimer’s symptoms progress, a person’s ability to handle their affairs will be affected. The sooner you begin making plans, the more your loved one can be involved in making decisions for the their future. It’s never too early to start planning. There are three major areas you will want to cover to get your loved one’s affairs in order: medical, financial, and legal.

Medical Affairs

Having a conversation about your loved one’s medical history, doctors, and wishes is essential to do while their memory is stable.

Medical History
Document your loved one’s entire medical history including surgeries, illnesses, prescriptions, blood type, doctors, and any other medical related information. Keep hard and electronic copies and put them in a safe place that is accessible to family members and caregivers. Having this information in one place allows caregivers and doctors to access it with ease, particularly in an emergency situation.

Health Records
Now is a good time to discuss if your loved one wants to give you access their health records. Health records are protected by HIPPA and cannot be released unless given permission by a patient. If your loved one approves, you will need to sign a form with his or her doctor.

Primary Care Doctor
If you haven’t already, establish a primary care doctor that is familiar with Alzheimer’s Disease. Before you do, be sure to do your homework. Read up on his or her background including their degree, online reviews, and ask for referrals from friends or other professionals.

Once you have chosen a primary care physician, schedule regular visits and have a family member or caregiver present at each appointment. These visits allow your doctor to monitor the progression of the disease as well as write referrals for specialists if needed.
Advanced Healthcare Directive
Also called a living will, an Advanced Healthcare Directive is a legal document that allows your loved one to elect a person, usually a family member, to make medical decisions should he or she become unable to speak for themselves. Examples of medical decisions include:

  • Resuscitation – Discuss if your loved one would like doctors to use CPR or electric shock to restart and stimulate his or her heart. If so, for how long.
  • Tube Feeding – Discuss if your loved one would like a tube inserted into their stomach to provide nutrients and fluids if they are unable to consume food. Discuss if and how long he or she would want to be fed by the tube.
  • Ventilation – Discuss is your loved one would like to be placed on a ventilator if they are no longer able to breathe on his or her own. Decide if and how long he or she would want to be on the ventilator.

While there are specific medical scenarios like the ones above, it is impossible to foresee the future. Therefore, it is a good idea to have a general conversation with your loved one on his or her beliefs and values can make you a good advocate for his or her wishes should any other medical decisions need to be made and he or she are unable to speak for themselves.

Financial Affairs

Setting financial affairs in order is another item to settle as soon as possible. Here are some things to consider:
Track Finances
Even in the early stages of Alzheimer’s, your loved one may need help managing their finances. With his or her permission, take stock of items such as bank accounts, bills, and other financial assets. Here are some things to inventory:

  • Bank accounts and account numbers
  • Bank balances
  • Bills and ongoing expenses
  • Outstanding balances
  • Debt
  • Total assets
  • Investments
  • Insurance policies

By assembling these items, you can monitor your loved one’s finances and help them stay on track financially.

Durable Power of Attorney
Your loved one can sign over a durable power of attorney, giving you the rights to make financial decisions on their behalf if they are unable to speak for themselves. In addition to a durable power of attorney, you might also consider hiring a financial advisor or other specialists like a CPA, estate planning attorney, or family banker, who specialize particularly in long term planning for those with Alzheimer’s. These advisors are helpful if the Durable Power of Attorney is not particularly familiar with financial matters.

Legal Affairs

When it comes to planning for the future, seek the services of an attorney, particularly one that has experience with elder law. By securing financial assets through the legal process, your loved one’s financial interests are more likely to be safe and secure. Legal affairs an attorney can assist you with include:

Will and Estate
A will explains your loved one’s financial estate and provides an itemized distribution of assets in the event of his or her death. As opposed to a living will, a will does not go into effect until your loved one has passed.

Find the latest version of your loved one’s will. If they have not created a will, move fast to get one in place as it must be signed while he or she is still able to make decisions.

Your loved one will need to elect an executor, which is someone who will manage their estate once they have passed. Then they will identify the beneficiaries, which will be the person(s) who will receive the estate. This must all be done in writing through signed legal documents with an attorney.

Fill A Safety Desposit Box
A safety deposit box is a secure box that is located within a vault inside a federally insured bank or credit union. Due to the fact that you can only access your safety deposit box during bank hours, you should only store valuables that you don’t need to access regularly or in a sudden emergency. Therefore there are certain things you should put in the safety deposit box and others you should leave out. Here are some examples:

DO Put In:

    Car titles
    Birth certificate
    Blank checks
    Medical records
    Fine jewelry
    Valuable collections

DO NOT Put in:

    Medical directives
    Durable powers of attorney
    Passports
    Health care proxies

While you should not put in the above items into a safety deposit box, they should be in a safe spot, such as an at-home safe, and accessible to family members and caregivers.

Section 4: Living Well With Alzheimer’s

While Alzheimer’s Disease poses real challenges for your family and loved one, that doesn’t mean there isn’t the potential for companionship, laughter, or happiness.

“Life does not end with a diagnosis, and one can continue to really enjoy their life.”
– David Kramer, Physician and Alzheimer’s patient

While Alzheimer’s Disease conditions are different for everyone, one thing that doctors can agree on is that by staying active and engaged, people with Alzheimer’s can lead a better quality of life.

Socialization

Socialization is part of human development for everyone. From the time we’re born, through adolescence, and into adulthood, it is an essential part of brain health. For people with Alzheimer’s in particular, socialization has proven to enhance and maintain focus, create a sense of belonging, and strengthen the connection between time and place.

“Socialization proves to enhance the lives of those with Alzheimer’s disease or related dementia and their care partners. We’ve known for some time that being social is an essential part of one’s brain health with healthy diet and exercise.”
– Alzheimer’s Association

While socialization for you and me could be going to the movies, eating at a restaurant, or having coffee in a loud cafe, socialization for a person with Alzheimer’s can mean something very different.

A controlled environment is key for effective socialization. Loud noises, too many new faces, or over stimulation can cause a person with Alzheimer’s to feel threatened, confused, or aggravated. Socialization is most enjoyable when done in a safe and secure environment.

Socialization Through Activity

According to the Mayo Clinic, social engagement and intellectual stimulation can help preserve mental function in people with Alzheimer’s. One of the best ways to socialize with your loved one is through stimulating activities. Some benefits of stimulating activities include self expression, lowered anxiety and irritability, engagement with others, and the activation of memories. Here are some stimulating activities to consider:

Music Therapy
According to Neurologist Oliver Sacks, “Music evokes emotion, and emotion can bring with it memory… it brings back the feeling of life when nothing else can.”

By playing familiar songs, a person with Alzheimer’s can pair rhythms to their everyday activities, which can bring back memories. Listening to positive lyrics and upbeat music can reduce stress and encourage positive interaction with others.

Puzzles and Board Games
Concentration and short term memory games have proven to stimulate cognitive functioning for those with Alzheimer’s. Not only do they allow one to exercise the brain, but they encourage positive social engagement and increase dopamine in the brain when accomplishing a goal (i.e. finishing a puzzle or winning a game). By concentrating on one activity, your loved one is likely to experience a decrease in anxiety, fear, and agitation.

Gardening
Gardening has many physical and mental benefits for people with Alzheimer’s. It is a peaceful activity that requires concentration, which in turn can be a form of meditation. Being outdoors and surrounded by beautiful plants and flowers can stimulate and engage senses that activate positive emotion. And, aside from the relaxation of gardening, a person can feel a sense of accomplishment and pride for maintaining the project.

Arts & Crafts
As Alzheimer’s symptoms progress, crafting gives your loved one an outlet to express themselves. Activities like knitting, quilting, painting, potting, and going to museums, are all effective ways to relieve stress, anxiety, and discomfort.

Arts and crafts are also a good way for children to share an activity with their loved one in a fun and comfortable way.

“Art therapy has been shown to be a powerful tool for people with Alzheimer’s; it helps them to express their feelings when they can no longer do so with words.”
-Ruth Abraham, Art Therapist

According to the AARP, it is important to spend time doing meaningful activities, not just ones that fill time. When choosing an activity, keep in mind that the activity depends entirely on the individual. Some activities may trigger memories in a negative way, so something that the person was once able to enjoy, may become frustrating or overwhelming now. Be prepared to adjust the person’s attention to a different source of stimulation if an activity goes south.

Exercise and Wellness

Exercise and wellness are key components to living with Alzheimer’s. The benefits include lower risk of high blood pressure and heart disease, enhanced ability to do daily activities, stronger bones, higher levels of self confidence, and improved cognition.

Keep in mind that physical fitness doesn’t have to mean running a mile. A person’s ability to exercise depends entirely on their physical ability as well as their mental capacity.

In addition to the traditional walk or swim, here are some forms of exercise and wellness activities:

Yoga and Meditation
This form of exercise combines mental and physical activity to engage different parts of the body and brain. Yoga involves slow movement of the body, while meditation requires concentration and relaxation. The practices of yoga and meditation can be easily modified based on a person’s physical and mental abilities, making it a versatile form of exercise.

Video Games
Believe it or not, video games have become a popular form of physical activity among seniors. Games like Wii tennis and Wii bowling are good ways to get your loved one moving. And, while research is still underway, there are studies that show video games could potentially lower the risks of Alzheimer’s in seniors.

Acupuncture
Acupuncture is an ancient Chinese method of inserting needles in certain locations throughout the body to restore and correct energy flow. It has been proven to treat a long list of ailments including allergies, anxiety, back pain, addictions, chronic fatigue, and more. In Alzheimer’s patients, there have been studies that show acupuncture improves mood and cognitive skills.

Aromatherapy
Aromatherapy is a natural treatment that has been proven to treat anxiety, sleep problems, and cognitive function. Various smells trigger different sensations and cause a person to relax or gain an appetite, for example. Some effective essential oils for people with Alzheimer’s are lavender to calm the emotions, peppermint to improve memory, and rosemary to stimulate the body and mind.

Nutrition and Healthy Eating Habits

People with Alzheimer’s are more likely to have a difficult time maintaining healthy and nutritious eating habits. He or she might forget meals, become overwhelmed by too many food options, or have difficulty using utensils to eat. Poor nutrition can not only have physical impacts such as weight loss or weight gain, but it can increase behavioral symptoms. Therefore, as a caregiver, it is important to be aware of certain behaviors and what you can do to help.

A Balanced Diet
People with Alzheimer’s do not require a complicated special diet. As with everyone, your loved one needs a balanced and nutritious diet that will serve their overall health. Foods that cater to a balanced diet include fruits, vegetables, whole grains, low-fat dairy, lean protein, and lots of H2O throughout the day. Avoid: Foods with high saturated fat and cholesterol, refined sugars, and foods with high sodium and salt.

Mealtime Routine
Alzheimer’s often disrupts a person’s mealtime. Distractions, new tastes and smells, and an overwhelming amount of options can lead to confusion, frustration, or loss of appetite. Having a mealtime routine can make your loved one feel safe and comfortable because they know what to expect each time they sit down for a meal. Here are some mealtime tips:

  • Simple Table Setting – Avoid centerpieces or extra place settings at the table that might be distracting. Place only essential items like silverware and dishes on the table that are necessary for mealtime.
  • Eat Together – Make mealtime a social event that your loved one can look forward to. Eating alone can be lonely.
  • Avoid Distractions – Stay away from eating in front of the television or having loud family meals. Distractions can cause confusion and loss of appetite.
  • Simple Servings – Too many food choices can be overwhelming. By giving your loved one less foods to choose from, they can feel more at ease about their decision to pick which food they want to eat.
  • Be Flexible – If your loved one doesn’t want to eat a particular food, don’t force it. Keep in mind that his or her preferences may change abruptly; be willing to adapt.

Section 5: The Need for Additional Care

There comes a time when at-home care is simply not enough and your loved one requires a higher level of care. While the decision to make the move may be difficult, there are important things to take into consideration and questions to ask before deciding what is the right next step for your loved one. This is where a senior living advisor can be of help.

The Role of a Senior Care Advisor

Senior care advisors, such as the ones at Senior Living Associates, are here to provide families and their loved ones explore their next steps and options for the senior living facilities that best fit your loved one’s needs. Due to their experience in the senior care market, they are able to provide families with insider knowledge on various communities such as memory care homes, assisted living facilities, at-home caregiving services, and other care options. They are also able to give advice on questions to ask and what to look out for when you tour facilities.

Determining Type of Care

There are several options when it comes to finding the right care facility for your loved one. Consider the following:

In-Home Care
This is a non-medical service where a caregiver can come to your loved one’s home and assist with bathing, meals, laundry, and housekeeping. It is a good option if you, another family member, or a voluntary caregiver can no longer take care of your loved one at home full-time. It is typically good for those in early stages of Alzheimer’s while your loved one can still maintain a certain amount of independence.

Adult Day Centers
These non-residential facilities provide care during the day for seniors and people with Alzheimer’s. These centers allow your loved one to socialize and participate in stimulating activities under the supervision of trained professionals. And, if you are a full-time caregiver or have a full-time job, adult day centers can provide a break from caregiving duties.

Memory Care
Memory care is a specific type of care that caters only to those with forms of dementia, including Alzheimer’s. Sometimes these facilities are located within assisted living communities, however these care units are specifically staffed by skilled medical professionals who specialize in memory problems. Some characteristics of a memory care facility include 24 hour surveillance and safety measures, around the clock care by skilled nurses, stimulating activities led by staff, and assistance with daily routines.

Nursing Home
A nursing home is for those who do not need to be hospitalized, but cannot be cared for in another facility or at home. Typically for those in the late stages of Alzheimer’s, this is a good option for someone that requires round-the-clock medical care and supervision.

Community Considerations

Once you have determined the type of care home that best fits the needs of your loved one with the help of your senior living advisor, it’s time to tour the care homes. When touring, there are some specific things to look for and important questions to ask so that you are getting all of the information you need to make an educated decision on what home is best for your loved one. Here are some examples on questions to ask and things to look for:

Questions

  • How is the community secured? What specific security measures are in place?
  • What is the staff to resident ratio during the day and at night?
  • What type of meals are served?
  • What type of training has staff received?
  • Is there a visiting physician?

Look Out For:

  • Peaceful environment
  • Residents playing games or socializing
  • An activity or events calendar
  • Bold colored signs without patterns
  • Talk to residents
  • Ask to see a room

Making the Move

When you have chosen the right home for your loved one, and the time comes to move them into their new home, there are certain things to keep in mind to avoid confusion, anxiety, and fear.

Avoid Build Up
Avoid telling your loved one about the move far in advance. This can create anxiety, fear, and anticipation. By not giving advance notice, it will provide fewer negative feelings and perhaps promote less shock.

Add Familiar Touches
Make your loved one feel at home. Bring pictures, blankets, plants, and other familiar things. Involve your loved one in the unpacking process so they feel like they have a part in making their new home their own. Allow them to make their bed and place objects where they want them.

Maintain a Routine
Go over their daily routine with your loved one and the staff before you leave. Maintaining the same routine as they had at home can help make your loved one feel more at home and less confused.

Section 6: Take Care of Yourself

Taking care of a loved one with Alzheimer’s can be overwhelming, tiring, and emotionally draining. That’s why one of the most common things family members and caregivers forget when a loved one has been diagnosed with Alzheimer’s Disease is to take care of themselves. Because the disease requires so much support and care for a loved one, caregiver burnout can happen without even realizing it.

According to The Family Caregiver Alliance, there is an increased likelihood of depression, emotional stress and financial problems among caregivers for those with Alzheimer’s. And, estimates show that between 40 to 70% of caregivers have clinically significant symptoms of depression.

While these symptoms of caregiver burnout can affect the caregiver themselves, they also directly affect your loved one. It might seem impossible, but there are ways you can take care of yourself and seek help and relief from burnout such as joining support groups, exercising, meditation, online message boards, and most importantly, never being afraid to ask for help.

We provide dementia care referral services to the following areas in and around the DFW metroplex: Allen, Arlington, Bedford, Carrollton, Colleyville, The Colony, Coppell, Dallas, Denton, Desoto, Duncanville, Euless, Flower Mound, Fort Worth, Frisco, Garland, Grand Prairie, Grapevine, Hurst, Irving, Keller, McKinney, Mesquite, Murphy, North Richland Hills, Parker, Plano, Prosper, Richardson, Rockwall, Rowlett, Sachse, Southlake, Wylie, and all other surrounding areas.

Because we are compensated by a referral fee when a senior moves in to a community, our services are always free for seniors and their families.
Please call us today at 214-929-5055 to learn more!

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