Knowing When to Say When: Dementia Care Placement

One of the most difficult, emotionally trying and even guilt-inducing decisions any geriatric caregiver of a dementia sufferer has to make is deciding when to place that individual in some type of congregate care setting, i.e. assisted living or the dementia area of a skilled nursing center.

Such a decision is never clear-cut as each case is different and has varying circumstances. In some cases it may take months, if not years of emotional wrangling before both the individual with dementia and the caregiver can make the final choice.

Don’t hang your head in despair just yet; there are some generally agreed upon guidelines that exist to help make sense of when to make the decision to place the dementia sufferer outside of the home setting. When reviewing these guidelines, factors such as family finances and family dynamics should also be taken into account.

Dementia Care Placement Triggers

Let’s first review the factors that can often justify placement for someone with dementia:

1. Caregiver burden/burnout

When a spouse, loved one, or other sandwich generation caregiver provides the primary or in some cases sole care for someone with dementia, it can understandably take a huge physical and psychological toll, especially when the care lasts for several years. It is not uncommon for the caregiver to develop his/her own health issues or exacerbate existing health issues as a result of caring for the individual with dementia. Unfortunately, many caregivers act selflessly by ignoring their own health concerns until they push themselves to the brink or a crisis occurs and they can no longer realistically take care of their loved one at home. The goal in avoiding this kind of crisis is for the caregiver to recognize when he/she can no longer care for the person and be honest enough to admit it to him/herself. Unfortunately, many caregivers need others to intercede before they will admit it is time and even then feelings of guilt can delay the decision further. See Recognizing the Signs of Caregiver Burnout

2. Wandering/Elopement

A number of dementia sufferers develop a habit of wandering away from their residence. Despite caregivers best efforts, people with dementia will find a way to elope if they really want to without understanding the risks involved. Once these episodes occur more frequently and are accompanied by the need to have police and other emergency authorities involved to assure the person’s safe return or in worse-case scenario situations where the individual with dementia suffers injuries as a result of the elopement, then it is fairly clear that this person needs to be in a more secure environment to minimize these risks and insure his/her safety.

3. Incontinence

Incontinence of bladder or bowel can often be addressed by family caregivers without significant difficulty, however, once the incontinence reaches a less predictable and manageable state, the burden of constant changes and accidents can weigh heavily on the physical care of the individual for the caregiver. Repeated unpredictable episodes of incontinence can be the basis for added stress on the caregiver and can trigger dramatic moments of desperation and tension in the relationship. These are the type of “breaking points” that can lead a caregiver much further toward making the decision to place his/her loved one in a community setting.

4. Physical/Verbal Abuse

While it is difficult to think about and even more difficult to articulate to others, physical and verbal abuse can occur on both sides of the dementia caregiving relationship. With stress levels being high many times, unintended incidents can occur that one party or the other regrets. In the case of the person with dementia, these behaviors can almost always be attributed to the disease. Nevertheless, they can create an untenable and, in some cases unsafe, situation for the caregiver, especially if these behaviors are repeated and not adequately addressed otherwise.

Possible Solutions for Care Placement Triggers

For each of the four placement trigger factors mentioned above, solutions can be found if the strong desire is to keep the person with dementia at home as long as possible, and in at least the first three cases, resources are available to support that decision:

  • Caregiver burden/burnout: If the financial resources are available, caregivers can find support through various sources including hiring private geriatric case managers to assist in care and also utilizing resources that might be available in the community such as dementia day care services. If possible, family and friends can be included to assist in the caregiving role on a scheduled basis to give the primary caregiver some relief.
  • Wandering/Elopement: Some caregivers have gone to the trouble of changing their home door locks as well as incorporating more recent developments in at-home dementia care including the use of wander guards for their loved ones (that will track their whereabouts) and other GPS-type devices that can pinpoint a person’s whereabouts should he/she get lost. Depending on the family’s financial circumstances, this may be a relatively inexpensive way to address the problem.
  • Incontinence: As is the case with caregiver burden, additional resources though paid geriatric care management or friends and family may be sufficient to help ease the stress of this aspect of the disease for the primary caregiver. This can sometimes make the difference for caregivers who are feeling overwhelmed by their responsibilities.
  • Physical/Verbal abuse: If these types of behaviors are occurring regularly or even more than once, it is unlikely that the home situation can be resolved, even with the addition of support resources. Medications may be added or adjusted by the doctors involved to assist in minimizing these events for the person with dementia. However, the reality is that some dysfunctional family dynamics do continue to occur for various reasons including limited financial resources or lack of knowledge about the disease and also the possibility of qualifying for alternate living arrangements, most often in the form of Medicaid spend-downs.

Geriatric Care ManagementIn most cases the strong preference among families is to keep their loved one at home for as long as possible. However, once the dementia reaches a certain point or stage of the disease, the advantages of keeping someone at home can begin to lessen and the advantages of placing him/her in an appropriate congregate care community that specializes in dementia care increase.

In the next installment of this blog topic, we will outline and discuss the steps and aspects involved once the decision is made for placement. For many, these steps place them in “uncharted waters” that can be made easier with some basic information about how the process works.

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Authored by Scott Tolan, Care Manager & Guardian Representative

Scott works with clients on a one-on-one basis to meet their needs and help them maintain a level of independence and dignity appropriate to them. His primary area of expertise is dementia and dealing with individuals with memory impairment. He has worked with clients and family members in various settings, including assisted living, skilled nursing, home care, and hospice.

Scott has completed advanced training and certification for special care/dementia unit directors that focuses on an activity-based approach in working with dementia residents. He has also facilitated several support groups for family members of those with memory impairment.

5 Geriatric Care Management Tips for the Sandwich Generation

The Sandwich Generation refers to a generation of people who are caring for their aging parents while supporting their own children. If you’re a caregiver in this generation you might liken the associated financial and emotional stress with the feeling of being “sandwiched” between the two responsibilities that are taking up most of your time.

Sandwich generation providers can create a care management sandwich that meets their needs and the needs of their aging parent(s) through effective planning, support, and advocacy.

5 crucial ingredients for a balanced care management sandwich:

  • Emotional well-being
  • Financial Planning
  • Healthcare
  • Career
  • Family

1. Emotional Well-being

For those taking on the greatest time commitment for providing care for an aging parent or parents and also trying to fulfill their own parenting obligations, finding time for self is an important part of maintaining balance in life. Caregiver burnout can seriously impact your quality of life and your ability to continue caring for your loved ones. It is essential that you carve out some time for yourself every day to do something for yourself. It might be a session at the gym, coffee with a friend, reading a book, or any activity that recharges your emotional batteries.

2. Financial Planning

Perhaps one of the biggest contributors to sandwich generation caregiver stress is managing the costs associated with raising children and maintaining the health of aging parents.

To help ease the financial burden talk to your family members and involve them in the financial planning process. Assess all of your financial resources and create separate accounts with allocated budgets for long-term care management and day-to-day expenses for the whole family. If this task seems too overwhelming, seek the help of a Certified Financial Planner that deals with long term care planning. Contact us to help find a specialist that meets your needs.

3. Healthcare

As your parents age, medical issues are likely to arise. Advance planning for possible physical and mental healthcare issues is key to effectively managing them. 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. Encourage the completion of a Durable Power of Attorney for Health Care form or an Advance Health Directive for Dementia in the event of your aging parent(s) being unable to make healthcare decisions for themselves at a later stage. Also see: Practical Advice on Caring For a Parent with Dementia5-step Geriatric Care Management Plan for Dementia Patients and the Families Caring for Them

Part of your planning should also include ways of keeping your aging parent(s) active. Involve them, as far as possible, in the day-to-day chores in the household and plan simple mental and physical activities like reading to the children, doing a crossword, going for a walk, joining a senior activity group etc.

4. Family

Multiple generations living together in one household can be stressful. There are so many voices that need to be heard, and often not enough time for everyone to have their say. Open, honest family communication is so very important for maintaining household balance. Try and set aside a time, perhaps around the dinner table, for each family member to talk about their day or share a personal experience. Plan a monthly family outing, even it’s in the back yard with a ball. Laugh together as often as you can and learn to sweat the small stuff.

5. Career

Juggling work-life balance is an art that requires a lot of planning and support – from your family and your employers. Don’t be afraid to ask your family members and colleagues for help if you need it, and you probably will. A geriatric care manager can also help you find the care management support and resources you need.

5-Step Geriatric Care Management Plan for Dementia Patients and The Families Caring For Them

Caring for a loved one with dementia comes with a unique set of challenges that often require professional support to effectively manage long-term care. Because dementia is a deteriorating condition, a physician/caregiver/patient relationship is the recommended approach for meeting the needs of elderly patients with dementia.

Follow these 5 steps to plan ahead and find the Geriatric Care Management support you need:

  1. 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. The physician can help caregivers 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 the 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. Taking the time for self-care will help reduce the chances of Caregiver Burnout (Also see 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.

Contact us if you need helping finding Geriatric Care Management support and resources.

Dementia and Guardianship

Dementia

1 in 3 seniors die with Alzheimer’s or some form of dementia. Of the 5.4 million Americans with Alzheimer’s, an estimated 5.2 million people are age 65 and older, and approximately 200,000 individuals are under age 65 (younger-onset Alzheimer’s). One in nine people age 65 and older has Alzheimer’s disease. By mid-century, someone in the United States will develop the disease every 33 seconds. Guardianship of adults suffering from Dementia can become necessary when the adult becomes incapable of making decisions for themselves and they don’t have a Power of Attorney in place. See What is the Difference between Guardianship and Power of Attorney?

Caring for a loved one with dementia comes with a unique set of challenges, including issues such as harm to self. For example, an individual might set a fire while cooking or become a wander risk or begin to think someone is going to harm them or is breaking into their home. See Practical Advice on Caring for a Parent with Dementia

Typically, as the disease progresses, it becomes more emotionally and physically draining for the caregiver who often reaches a breaking point. When focusing on the negative, it can become exhausting and overwhelming. See Recognizing the Signs of Caregiver Burnout

It’s important to find supportive services such as those offered by Living Life with Dignity before this point is reached. The volatility of the disease can make situations dangerous and upsetting. Depending on the progression or type of dementia, needs can change rapidly. For many, it is a full time commitment. See Dementia and Caregiving Challenges and What is a Health Directive for Dementia?

Case Study

Living Life with Dignity was appointed Guardian of and Advocate for an 83-year-old female suffering from Dementia.

Background

She was a retired nurse living alone, estranged from her adopted son and raising her deceased daughter’s son. The female, having lived in her current home for 60 years, had her neighbors all rally to help. Her phonecalls to the neighbors started to become erratic and she became acutely paranoid that someone was trying to break into her home. She refused having a caregiver and expressed her desire to fire her attorney and Power of Attorney. Upon contacting a new attorney, it became obvious to the attorney that the client needed intervention and guardianship.

Services

Living Life with Dignity was called in and we provided the following services for the client:

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

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.

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

What is a Plenary Guardian?

Plenary Guardianship for aging adult with dementia.Jim was becoming increasingly confused and estranged, and his actions were unpredictable. One day his wife asked him to put the kettle on for a cup of tea; he replied ‘yes’. When his wife came back into the kitchen a short while later, he was just standing there staring at the kettle as if it were a foreign object. It seemed he had lost interest in life, his financial affairs were in disarray, and he could no longer find the words to communicate it. He had forgotten how to drive, read, or perform any normal daily tasks, to the point where he was unable to dress himself in the morning. His aging and unwell wife was finding it impossible to manage his dementia and their estate any longer, and he clearly could not care for himself. Jim’s wife took him to the doctor and her worst fears were realized – the doctor declared him incapable of making decisions for himself. It was time to consider plenary guardianship, as Jim was not competent to enter into a Power of Attorney, the document in which a competent person grants authority to another individual to act on his/her behalf. See Dementia and Guardianship

Plenary guardianship is when the court finds an individual incapable of caring for themselves, and therefore gives a legal guardian rights over and responsibilities towards that individual or “ward”. Plenary guardianship must be appointed by the court. This kind of petition would include the name of the person in need of guardianship, their date of birth and address, and a report by a doctor stating the physical and mental incapability of the person. See What is the Difference between Guardianship and Power of Attorney?

Types of Guardianship

Other less restrictive types of guardianship do exist and the court will decide which is suitable for the individual in question. Illinois law permits several different types of adult guardianship:

Limited Guardianship

A limited guardianship permits the guardian to make some, but not all, decisions for the person under the guardianship.

Guardian of the Person and Guardian of the Estate

There are different types of plenary guardianship – it may be as to the person (personal care, education, and medical services) or as to the estate (financial affairs and property) or as to both.

Temporary Guardianship

In emergencies, the court may appoint a temporary guardian for up to 60 days to protect a person with special needs’ interests.

Successor Guardianship

A successor guardian takes over the guardianship when the initially appointed guardian no longer can serve.

Testamentary Guardianship

Parents of children with special needs use testamentary guardianships to protect their children who are living under guardianships in case of the parent’s death.

Duties of the Plenary Guardian

A Plenary Guardian has legal rights by the court to make all decisions for the person that is found to be incompetent. It is important to note that this is a legal appointment, not a medical appointment. The medical report presented to the court is only part of what a judge will consider in making a decision for a potential ward. Once someone is under guardianship they will not be able to engage in certain activities. This is including, but not limited to, their estate. While someone is under the care of a guardian they may not:

  • Determine residence
  • Consent to medical treatment
  • Make end-of-life decisions
  • Possess a driver’s license
  • Manage, buy, or sell property
  • Own or possess a firearm or weapon
  • Contract or file lawsuits
  • Marry
  • Vote

The plenary guardian is responsible for managing the needs of that person. If proper housing needs to be secured, it is the responsibility of the guardian. If medical needs have to be addressed, it is the responsibility of the guardian. The guardian is also to manage the client’s financial and insurance needs, including applying for Medicare or Medicaid or Social Security if necessary. Some additional things a plenary guardian can be responsible for include the following:

  • Determine and monitor residence
  • Consent to and monitor medical treatment
  • Consent and monitor non-medical services such as education and counseling
  • Consent and release of confidential information
  • Make end-of-life decisions
  • Act as representative payee
  • Maximize independence in least restrictive manner
  • Report to the court about the guardianship status at least annually
  • Marshall and protect assets
  • Obtain appraisals of property
  • Protect property and assets from loss
  • Receive income for the estate
  • Make appropriate disbursements
  • Obtain court approval prior to selling any asset
  • Report to the court or estate status

Plenary Guardian Requirements

It is required by Illinois law that a plenary guardian be 18 years or older without a felony and capable of the responsibility. It also states that you cannot be in service to the ward other than to provide guardianship services and that there may not be any debt owed to you by the ward. These simple requirements come with much responsibility. Often a well-intended family member is willing to take on this role without fully understanding the magnitude of what they are getting into. Knowing all there is to know to help someone in need of a guardian is challenging. The impact of being the caregiver can be tremendous. See Recognizing the Signs of Caregiver Burnout

If you find yourself in this situation, we suggest you sit down with a good estate and probate attorney experienced in these matters to learn what is involved before you decide to take it on. If you have already accepted an appointment then your attorney might be able to help you manage and understand the requirements.

As advocates and professional guardians we can help you put a plan in place that is easy to follow and maintain. You don’t have be in this alone. With professional expertise you will have the support you need to be the best guardian for your loved one and know you are making the right decisions.

If you have any questions regarding guardianship, please post them below so we can raise awareness and help others who might be facing similar issues.