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-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.

Choose Love, Not Stuff

I wrote this while my mother was ill some time ago, but the message is still true: Choose balance, choose love, and replace “things” with treasured memories and happy days.

There is never enough time.

Find time for balance in your lifeAs I sit here in the ICU with my ailing mother I lament on what I should have done. What else could I have done? There is never enough time. We all have choices as to how we live our lives and sometimes it is difficult to know when you need to take time away from work to help someone else or when it will be ok to just carry on your day.

I am so aware of my actions and emotions these days that I often feel that ignorance is bliss. How much easier it would be to just react and not be proactive. I have to catch myself and encourage myself to live in this moment. Last night I thought my mother wasn’t going to last through Christmas she was so sick. Today is a good day. She is alert, smiling and eating. I am happy, in this moment, at this time to have her, to love her.

I am reminded of the story “I’ll Love you Forever.” It is a story of a mother that cares and nurtures her son. As a baby she rocks him and tells him she will love him forever. As the story goes on it depicts the relationship of the mother and son and how it changes until the little boy is a grown man caring for and nurturing his mother, rocking her as she had rocked him. As I am blessed to be able to care for my own mother I realize that this transition has occurred. I am now her parent.

When I was a little girl I used to love to be rocked, (truth be told, I still rock when I am stressed). Instead of asking my mother if she would rock me, I would ask her “Momma, can I rock you?” I, like the son in the story, would love nothing more than to pick her up and rock her to sleep. Sleep, with sweet, sweet dreams of heaven.

Only God knows when he will take her, but I know she is ready. She has told me so. What a blessing to know that she is satisfied with her life and that she, while frightened of the unknown like all of us, is at peace knowing she is going “HOME” soon.

Part of having a balance in life is being able to live with the choices you make. Loving and being loved go hand-in-hand.

May you always realize that time and love are your greatest gifts. May you always remember what is important in life. May you make good choices, starting with choosing happiness and love over objects and clutter.

Depression: Top Mental Health Threat to Seniors

Depression - Top Mental Health Risk to SeniorsDepression is NOT an inevitable part of aging. Changes that accompany later life – retirement, the death of loved ones, increased isolation, medical problems – can sometimes lead to mental health issues like depression. Depression prevents elderly loved ones from enjoying life. Aside from mood, depression impacts energy, sleep, appetite, and physical health.

Depression in later life frequently coexists with other medical illnesses and disabilities. Because of changes in an elderly person’s circumstances and the fact that elderly people are expected to slow down, doctors and family members may miss the signs of depression. Depression tends to last longer in elderly adults. It doubles their risk of cardiac diseases and increases their risk of death from illness. At the same time, depression reduces an elderly person’s ability to rehabilitate. Also see Late Life Depression, Late-onset Depression and Dementia

In order to pro-actively provide support it helps to be able to recognize the signs of depression in an elderly person, such as expressing feelings of hopelessness or sadness that don’t go away and loss of interest in activities they previously enjoyed.

Causes and risk factors that contribute to depression in the elderly include:

  • Loneliness and isolation – Living alone; a dwindling social circle due to deaths or relocation; decreased mobility due to illness or loss of driving privileges.
  • Diminished sense of purpose – Feelings of purposelessness or loss of identity due to retirement or physical limitations on activities.
  • Health problems – Illness and disability; chronic or severe pain; cognitive decline (dementia/alzheimer’s); damage to body image due to surgery or disease.
  • Medications – Many prescription medications can trigger or exacerbate depression.
  • Fears – Fear of death or dying; anxiety over financial problems or health issues.
  • Recent bereavement – The death of friends, family members, and pets; the loss of a spouse or partner.

Here are some steps recommended by HelpGuide.org that can help your loved one overcome the symptoms, no matter the challenges they face:

  • Encourage them to learn new skills, try new activities, or make fresh lifestyle changes. The human brain never stops changing, so older adults are just as capable as younger people of learning new things and adapting to new ideas.
  • Exercise. Physical activity has powerful mood-boosting effects. In fact, research suggests it may be just as effective as antidepressants in relieving depression. Even if they are ill, frail, or disabled, there are many safe exercises they can do to build strength and boost their mood—even from a chair or wheelchair.
  • Facilitate opportunities to connect with others, face to face whenever possible. Getting the support they need plays a big role in lifting the fog of depression and keeping it away. If you cannot get them out to socialize, invite loved ones to visit them or keep in touch over the phone or email.
  • Maintain a healthy diet. Avoid eating too much sugar and junk food. Encourage healthy foods that provide nourishment and energy, as well as taking a daily multivitamin.
  • Foster participation in activities they enjoy. Pursue whatever hobbies or pastimes that bring or used to bring them joy.
  • Encourage them to Volunteer. Helping others is one of the best ways to feel better and expand their social network.
  • Create opportunities to laugh. Laughter provides a mood boost, so swap humorous stories and jokes with your loved ones, watch a comedy, or read a funny book.

Make sure they get a checkup with their doctor and talk to their pharmacist regarding drug side effects and/or interactions, as symptoms of depression can also occur as part of medical problems such as dementia or as a side effect of prescription drugs.  Watch for suicide warning signs. Seek immediate professional help if you suspect that your loved one is thinking about suicide.

There is help for seniors who are dealing with depression. Be open about asking for professional help. There are experts who deal with these issues and know how to help. For more information visit Helpguide.org

Also see:

For other helpful caregiving 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

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

Recognizing the Signs of Caregiver Burnout

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

Here are some signs of caregiver burnout:

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

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

Some Self-Care Tips:

Seek Help Emotionally:

Support group

Group therapy

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

Get an “on-call” friend

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

Journal/Blog

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

Consider counseling

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

Seek Help Physically:

Ask for help

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

Respite Care

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

Get a physical

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

Get away

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

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

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

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

Practical Advice on Caring For a Parent with Dementia

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

Dementia Caregiving and the Health Care System

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

Make sure your loved ones’ physician:

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

5 Steps Caregivers can take to Prepare for Dementia Care Problems

Dementia and the Health Care System

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

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

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

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