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Dementia Care: When is the Right Time to Place?

By Todd A. Shetter, Chief Operating Officer, ActivCare Living, Inc.


Deciding that the everyday care and monitoring of a loved one is better off in the hands of full time professionals in a specialty care community rather than with family members is a difficult and complex conclusion to reach. Many factors feed into evaluating the best environment and location for safe, compassionate and successful care for those with memory loss and physical care needs.

First and foremost is the need to establish a realistic and factual picture of the current and future needs of the loved one suffering from Alzheimer's or related dementias. In addition it is important to have all of the decision makers and stakeholders included in the discussion and willing to participate in a candid dialog. Emotions are always on the surface in frank and personal discussions, but ground rules need to be established prior to an open and honest exchange of ideas. Everyone participating in the care plan discussion needs to be on board and agree that well-being, quality care and best possible outcomes for the loved one affected by memory loss are the ultimate goals of the group.

Staying at home with care and support from family members, friends and/or paid private-duty caregivers is usually the first step when attempting to structure care and support for a family member with dementia. In many cases, those arrangements and plan can be successful or at least efficient for a period of time but may not endure with the progression of the disease.

Ask yourself these questions when evaluating care support at home initially and over time:

1. Is it safe? Is the home setting and physical environment safe for the current and future needs of the person with dementia? Wandering should be one of the biggest concerns and issues to protect against. Simply padlocking doors, gates or sliding glass doors is not the solution. What happens in case of a fire? There needs to be a safe and secure environment for caregiving and living that does not compromise the safety of everyone in the home.

2. Are the caregivers capable and competent? No matter whether the caregivers are family members, spouses, friends or paid staff, the question needs to be honestly addressed. Caregiving for someone with dementia is one of the most difficult jobs in our industry and here is why: You must be alert, insightful and aware at all times. Anticipating someone's needs, detecting small changes in behavior and sensing something may be wrong is how we compensate when there is no longer an ability to communicate. Caring for larger men or wheelchair-bound women who may need physical assistance with walking, toileting or transferring is physically demanding work for an elderly spouse who may have her own health concerns.

3. What's the back-up plan? When the wife is sick, when the paid caregiver doesn't show up, when the daughter goes on vacation, who is prepared to take over the daily care? Caregiving for someone with dementia is a 7-day-a-week-24-hour-a-day commitment. There always needs to be a Plan B, C and D.

4.Is it the best scenario for all involved? Not everyone was born to be an empathetic, nurturing caregiver. Whether it's not in your DNA or family dynamics have caused distance and resentment - caregiving is not for everyone. Just because there are family members close by, available and capable does not mean that they are the optimum caregiver and staying in the home is right choice. When adopting a caregiver role, the risk of losing identities or roles such as wife, daughter or son is greater. Caregivers give showers and help dress, dispense medications, monitor nutrition and ensure eating, assist with toileting, encourage walking and exercise, address repetitive questions and face resistance - all for the betterment of the individual. If you are not willing to gently, nudge, push and be consistent in daily care, you are not the right person.

5.What does it Cost? If you are bringing in paid private duty caregivers to your home from a professional and bonded company the cost for eight hours a day of primary caregiver duties is at least $160 to $200 a day for those services. Hiring someone from the newspaper or Craigslist is not recommended for many reasons including risks of fiduciary abuse, injury claims by the caregiver or worse - unskilled care leading to injury of your loved one. Keep in mind, when paying more for less than full-time unskilled care exceeds the cost of the monthly care in a specialized memory care community, it is time to look at alternatives.

Making the decision to place in a specialized memory care community is an individual choice driven by a multitude of factors including family support, finances, geography, guilt, caregiver health and capabilities. Sometimes the preconceived notions of senior care homes delay decisions. The specialized memory care communities of today are worlds apart from the nursing home and "old folks' home" of yesteryear.

Everyone has a different tolerance and empathy factor when caring for a loved one. Benevolent, compassionate and enduring caregiving is not a universal skill or trait. Sometimes good intentioned caregivers end up with less than desirable outcomes. It should not be looked upon as failure. We were not all born to be caregivers. For each endeavor and challenge in life that we face there is a "right" person for the job. Sometimes it is not us.

Take the time to look inward, make the time to talk with family members, consider all the factors and the desired outcomes and find the "right" people, place and environment for those you love that need care.