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.