When Should Mom or Dad's Dementia Require Care and Supervision? Proper Care Improves Quality of Life

There are several consequences families will encounter with aging parents, including dementia. When should a family seek professional help with a parent with dementia? Experts say, right away.
Updated: April 14th, 2023
Linda Kople

Contributor

Linda Kople

When you start noticing that Mom or Dad's memory is declining, it can be a bombshell that rocks the family. Emotions like shock, disbelief, and denial can be overwhelming. It is difficult to believe that a parent who has been a rock of stability for so long could be experiencing such an alarming decline in cognitive function.

The first reaction to a parent's memory loss can be incredibly emotional. There can be a sense of loss and deep sadness that comes with watching a parent struggle with even the most basic tasks. Adult children may be flooded with memories of happier times, struggling to reconcile the person they knew with the person they see in front of them.

This is also hard on the other parent as they see their spouse forget many of their shared memories. In addition to these emotions, there can be a sense of helplessness and frustration. 

Knowing what to do or how to help can be challenging, particularly if the parent is resistant to acknowledging the issue. Adult children may feel like they are floundering, trying to find a way to make everything right again and bring back the parent they once knew.

Hard Conversations Ahead

It is hard to have a conversation with friends and coworkers without someone talking about their parent's declining health and memory. The United States Census Bureau has reported that the nation's 65-and-older population has grown rapidly in the past twenty years. As people age, they see a decline in their health, body, and mind.

Mild cognitive impairment (MCI) is a very mild form of forgetfulness and disruption in thinking and reasoning. MCI and mild dementia are common health problems in elderly individuals.

According to the Alzheimer's Association, MCI is present in between 12% and 18% of adults over 60. An estimated 10% to 15% of people with MCI experience dementia every year. About one-third of people living with MCI due to Alzheimer's disease develop dementia within five years.

Early On, Loved Ones Can Remain Independent

Anne Shandera-Ochsner, Ph.D., from the Mayo Clinic, says those with MCI or mild dementia may still function fairly independently.

People with MCI are still pretty independent with their daily functioning. They usually are still driving, cooking, paying bills, and taking care of the house. Some are even still working. They may use systems, strategies, or other aides (like a pill organizer) to keep themselves independent.

On the other hand, she explains, those with dementia have cognitive issues that have declined to the point that they make it difficult for them to go about their everyday lives independently. 

Therefore, they may have family members or health care assistance who administer their medications to them, do the cooking, and/or provide transportation.

Care Will Be Required as Dementia Progresses - Not Covered by Medicare

Those with MCI can still do most of their everyday living activities independently. Assistance is necessary for those who have dementia. As MCI or mild dementia progresses, the ability of the individual to remain at home independently, without the help and assistance of another person, ends. At this point, the family will need to step in and find a solution.  

People with dementia experience cognitive changes that affect decision-making, self-care routine, and fulfillment of basic needs such as proper nutrition.

Most families are unsure how to proceed at this point. They discover that health insurance, including someone's Medicare, will not pay for the custodial care someone with dementia will require. Custodial care is help with activities of daily living or supervision due to cognitive decline. 

Long-Term Care Insurance will pay for these services, as will Medicaid if the care recipient has little or no income and assets. Otherwise, families must scramble. Since older spouses and adult children are typically unable to provide this care over a period of time, professional care must be brought in. 

The cost of care is costly, as the LTC NEWS Cost of Care Calculator shows - LTC NEWS Cost of Care Calculator. The cost of this care will be paid by Long-Term Care Insurance (if they own a policy) or through the individual's income and assets.

The problem of dementia and long-term care has become a significant public health crisis, according to Robert W. Levinson, Ph.D. at UC Berkley. 

Dementia has become one of the most critical public health challenges of our time.

People with mild and advanced dementia often require 24-hour care and supervision to prevent danger to themselves or others. They might also need assistance with daily tasks, including eating, bathing, and clothing. It requires the person's caregiver's time, patience, and careful consideration to meet these demands.

When to Seek Professional Care?

At what point should a family find professional help and supervision for their parent or loved one? Right away, says Dave Johnson, the franchise owner of Amada Senior Care for Northern Illinois based in Grayslake, IL. Amada is one of the nation's most respected home health care agencies with franchises nationwide.

Dave Johnson

Johnson says family members are often in denial of what is happening with their loved one. This denial can delay getting the appropriate care right away.

Adult children can have a tough time realizing that a parent needs help because the children remember how the parent was before the cognitive decline started. When they come to the realization and overcome their denial, they are most likely willing to engage in professional caregiving assistance.

Johnson says the first step is to get an assessment to understand what the parent is struggling with daily. Once that is complete, a plan of care can be developed. 

Caring for someone with memory loss has many challenges that affect the family and the caregivers. Johnson says that they assure the family that an individual care plan will be developed for the care recipient and that care will be consistent with all the caregivers that come into the home. 

Consistency is vital for those with dementia.

Consistency and repetition assure higher quality care. You want to avoid a caregiver who comes in and does something one way, and then the next caregiver comes in and does it another way.

Adult day care is often recommended to reduce some of the cost of full-time in-home care. Over time the needs of the care recipient may be greater than what can be provided at home. In this case, a nursing home or memory care facility would be recommended. 

Money Can Influence Quality of Care Sought by Families

Money can influence the quality and amount of care provided. Those with Long-Term Care Insurance can make decisions based on their needs.

Long-Term Care insurance helps families because making care decisions for a loved one with an LTC policy becomes much easier. Policyholders are better positioned to make decisions based on the amount of care needed rather than the amount of care provided.

Johnson says that those without Long-Term Care Insurance will often receive a fraction of the required amount of care because of the costs. In some cases, an individual would rely on family caregivers who lack training or the time to provide the quality care necessary to maintain a good quality of life.  

Imagine a 75-year-old woman trying to help her 200-pound husband with dementia get to the bathroom three or four times a day and make sure they don't wander or do something to hurt themselves. 

Professional caregivers are trained for this; untrained family caregivers can easily be stressed or hurt themselves in the process of being a caregiver.

Insurance or not, quality care is essential for a loved one's well-being. Delaying professional care will often make the situation worse. The Alzheimer's Association estimates that adults 65 and older live an average of four to eight years after receiving a diagnosis; however, some survive the condition for up to 20 years. The burden on family and finances can be substantial. 

Long-Term Care Impacts Families and Finances

Even the most meticulous financial planning can be destroyed by long-term health care. Figuring out how to pay for it can be challenging unless an advance plan had been put in place well before someone needs long-term care. Often little or no thought about long-term care or dementia had taken place.

Many experts suggest being prepared for the consequences of aging before you retire. Proper preparation will protect income and savings. It will also reduce the stress and anxiety that is otherwise placed on family members.

Long-Term Care Insurance can be part of the solution providing the policyholder with access to quality care options, including in-home care. Most people obtain coverage in their 50s to take advantage of better health and lower premiums.

Several top insurance companies offer coverage. Each company has its own underwriting criteria and pricing. Premiums can vary over 100% between insurance companies, so seek the help of a qualified Long-Term Care Insurance specialist to assist you in finding affordable coverage. A specialist will match your current age, health, and family history and get accurate quotes and options to consider. 

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