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

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

The Impact of Being a Geriatric Care Giver

Family StressIf you think you are saving by caring for your loved one…think again. Below are some statistics that show the huge impacts to the individual care giver, not just in health but financially as well. There is also stress put on the family that can divide even the strongest of families. In turn, most people don’t want to have to be taken care of by a loved one. Feelings of guilt and regret, regardless of fault, can make one feel like a burden.

Navigating the system is also becoming increasingly difficult. An Advocate can help save your family from personal and financial ruin and reduce the stress that this process creates, providing you the time to spend with your loved ones, worry free…

As professionally certified guardians, we care for personal and financial matters, protecting individual rights and safety. We ensure that the life/care plan we build is consistent with the individual’s strengths, needs and choices.

Six reasons why being the care giver is not always the best option

  1. 23% of family caregivers caring for loved ones for 5 years or more report their health is fair or poor.
    Caregiving in the United States; National Alliance for Caregiving in collaboration with AARP; November 2009
  2. Stress of family caregiving for persons with dementia has been shown to impact a person’s immune system for up to three years after their caregiving ends thus increasing their chances of developing a chronic illness themselves.
    Drs. Janice-Kiecolt Glaser and Ronald Glaser, “Chronic stress and age-related increases in the proinflammatory cytokine IL-6. “Proceedings of the National Academy of Sciences, June 30, 2003.
  3. Nearly three quarters (72%) of family caregivers report not going to the doctor as often as they should and 55% say they skip doctor appointments for themselves. 63% of caregivers report having poor eating habits than non-caregivers and 58% indicate worse exercise habits than before caregiving responsibilities.
    Evercare Study of Caregivers in Decline: A Close-Up Look at Health Risks of Caring for a Loved One. National Alliance for Caregiving and Evercare. 2006.
  4. American businesses can lose as much as $34 billion each year due to employees’ need to care for loved ones 50 years of age and older.
    MetLife Caregiving Cost Study: Productivity Losses to U.S. MetLife Mature Market Institute and National Alliance for Caregiving Business. July 2006
  5. Women who are family caregivers are 2.5 times more likely than non-caregivers to live in poverty and five times more likely to receive Supplemental Security Income (SSI).
    Study conducted by researchers at Rice University and data compiled from the Health and Retirement Study funded by the National Institute of Aging and conducted by the University of Michigan, 1992-2004
  6. Caregiving families (families in which one member has a disability) have median incomes that are more than 15% lower than non-caregiving families. In every state and DC the poverty rate is higher among families with members with a disability than among families without.
    Disability and American Families: 2000, Census 2000 Special Reports, July 2005.