One in three seniors dies with dementia. That’s a lot. If you are working in home care serving the elderly, whether you know it or not, you have a high number of patients with dementia in home care. The reason I say “whether you know it or not,” is sometimes these individuals are symptom positive, but the diagnosis has not yet been made. That creates a dangerous situation for all.

A longitudinal study in the January 11, 2012 Journal of the American Medical Association found that dementia patients get sent to hospitals nearly twice as often as peers who are cognitively healthy. As we know, we really strive to keep seniors out of the hospital.

Dementia patients may end up at hospitals more frequently because they have difficulty:

  • Managing existing medical conditions,
  • Taking medications on schedule, or
  • Alerting caregivers and physicians to new symptoms.

To complicate matters, studies show Alzheimer’s disease is the most feared disease of aging as many believe receiving the diagnosis is like receiving a death sentence that will lead to suffering. Therefore, many are unwilling to face their reality.

But I have found the opposite to be true. While denial can be a great coping mechanism, it’s a major roadblock to living well with dementia. It robs the person of the opportunity to get medications that can help slow down the progression and improve quality of life. And denial of the problem prevents medical and care teams from having the cognitive competency information needed to match treatment interventions with ability level.

When someone has dementia, they have cognitive challenges that interfere with their ability to manage daily life independently. Cognition is the primary determinant of a person’s level of function potential. First, they will have challenges with Instrumental Activities of Daily Living (IADLs) such as driving, managing money or medications, and cooking. As the disease progresses, they will need help with basic Activities of Daily Living (ADLs) such as dressing, bathing, and eating.  

As cognition declines due to Alzheimer’s disease, the need for support goes up. Over several years, typically 8-12, they become more and more dependent on others to know how to provide the right cognitive support that optimizes and maintains their function, safety, and engagement in life. Without the right support they are at risk, and so is your agency.

Not properly diagnosing a person living with dementia hurts everyone involved and hinders the effectiveness of your services.

Sometimes you are given the advantage of learning the client has a dementia diagnosis before you arrive so you can be prepared. But many other times you are not informed because the medial team has yet to make a diagnosis, or the family is simply in denial that a dementia-related problem exists.

Home health care workers such as aides/companions, nurses, Occupational Therapists, and social workers often are the first to recognize cognitive impairment symptoms because these symptoms display functionally, in everyday life activities. As examples:

  • A home health nurse may be teaching a client a new medication regimen and they notice the patient has difficulty learning.
  • An Occupational or Physical Therapist may be teaching a new strategy such as how to go up and down stairs safely, or how to use a walker functionally, and they notice the patient can’t generalize, remember, or carry over what has been taught.
  • The companion may be accompanying the client to the usual grocery store but this time it has undergone a renovation. No aisle is like it was, rendering the client unable to locate one item on their list, and creating anxiety, frustration, or even agitation.

In these moments, the medical professional or hired caregiver is making critical observations that must be reported. They are identifying functional cognitive challenges the client is having with learning something new, applying what they learn, or adjusting to change. These are red flag problems that must never be ignored. These are signs of cognitive impairment impacting function and safety and are potentially symptoms of dementia.

The bottom line is, if we see something, we need to say something. A critical role then is to help identify individuals with symptoms of dementia in home care so that they are properly diagnosed. This will help the care team establish realistic goals and expectations and successfully adapt treatment plans and approaches, enabling the person and their family to get the help and resources needed.

It is difficult to detect changes in cognition in the beginning of the dementia journey because many of the causes, such as Alzheimer’s disease, are insidious; they come on gradually. Unlike acute health conditions like a stroke—where the person looks significantly different from one day to the next—dementia comes on gradually and subtly. This makes it difficult to detect, and leaves families to start questioning, “Is mom okay?” But they are unsure if they are really seeing a problem that requires medical attention, or if it is something that can be easily explained away.

Another complicating factor of early detection and diagnosis is the fact that verbal communication may still be intact, even when judgement, safety awareness, and new learning are not. This creates a dangerous situation in which many may assume, “Mom is doing okay because she told me so over the phone.” This means the cognitive changes may initially go unnoticed by loved ones or during a doctor’s visit, leaving everyone to assume, “all is okay.”

Help families see and accept what is happening.

Acceptance of the reality that their loved one may be experiencing dementia in home care is helped by increasing their recognition and awareness of the associated life problems. They must go beyond how capable someone is of “talking the talk” and look at how well they are “walking the walk.”

A way to help them see this vital difference is through focused questions. We can ask loved ones to recognize changes already happening in everyday life and to explore the probable cause.

As examples we can ask questions such as the following:

  1. “Why have you recently taken over paying the bills for your mom?”
  2. “Why did you encourage your mom to stop driving?”
  3. “Why did you decide to bring in a companion service for your mom?”

Then guide them further and suggest the probable root cause by sharing, “If there are no physical or other obvious reasons for you providing this extra support, it is likely due to cognitive changes, and at your mom’s age it is likely being caused by dementia. I’d highly recommend you have her assessed to determine the reason behind these cognitive changes so both she and you get help.”

There are ways that you can identify and help support those with dementia in home care.

  1. Watch for changes in function that can’t be explained in any other way. As examples, if the person in care is having problems paying bills and it isn’t due to a visual problem, it’s likely because their cognition is declining. If they are having more falls at home yet there isn’t any new decline in their physical condition or balance, it may be due to poor judgement or safety awareness. Note these observations and keep a journal. If they are recurring, you are likely seeing evidence of a cognitive issue, possibly caused by Alzheimer’s or another dementia. Ask others who interact routinely with the person in care to share their observations to capture a better picture of day-to-day life. Attached is a tool we created to help identify early signs of cognitive functional challenges.

  2. If a pattern of challenges and cognitive and functional changes is clear, recommend your client see a professional who can conduct assessments to determine what is going on. The general practitioner could run blood work or look for medications that could be creating cognitive changes. If nothing is found, a specialist in cognition such as a neurologist may be required to take testing further. The assessments conducted by the medical team will help confirm any problem, determine the severity and the cause, and help to identify a treatment plan.

  3. Refer to experts. Consider hiring Occupational Therapists trained in dementia care. They are experts at understanding how to adapt daily living, leisure activities, and environments to match the ability level of the person with dementia. They can help the person living with dementia in home care establish maintenance programs and train their loved ones.

  4. Care teams (home health professionals, private pay/non-skilled companion care providers, families, etc.) need good communication. Working together, with common knowledge and common goals, is essential for the team to provide effective care. Families are especially important, because they want to know what is going on and how they can help. Care apps can help with family communication. One that I have found that appears to have great features and benefits is Caring Village. There are many. I suggest you and/or your patient families consider them.

There are many people diagnosed with dementia in home care, or symptom positive and not yet diagnosed, and there will be many more tomorrow as the population rapidly ages. These individuals need help to stay actively and safely engaged in life activities. When we recognize and address dementia, the family and the medical care team can work together to mitigate the impact on function, safety, health, and quality of life.

Plans should be holistic and include proper medications, health management, and life engagement plans. Any social, physical, or cognitive activity has tremendous benefits. Our common goal should be to keep the person engaged in meaningful daily activities at their best ability, optimize health and quality of life, and reduce hospitalizations.

The bottom line is to not let the person with dementia in home care disengage from life or lack the needed medication and daily care support. It can have detrimental effects. The sooner the family and care teams can identify and begin addressing the medical and care needs, the better. All will thrive and result in positive outcomes. Skilled identification, communication, and empathy are keys for success.

Author Bio: Kim Warchol, OTR/L
President and Founder of Dementia Care Specialists at Crisis Prevention Institute