• Can caregiver stresses and challenges be managed better to help support loved ones and health professionals caring for people with Alzheimer’s Disease?

More than 1 million Americans have advanced dementia (Hebert et al., 2003) and experience loss of meaningful communication, total functional dependency, and a median survival rate of 1.3 years (Mitchell et al., 2009). Their families face care choices of home care, institutional care in a memory facility, or in-home care.   Decision difficulties include finances, letting go of a love one, and denial of disease progression. 

Family and caregiver decisions might consider a recent study (Amjad et al., 2016), indicating lack of continuity in care was linked to higher rates of hospitalization, emergency department visits, testing, and healthcare spending for fee-for-service Medicare beneficiaries. 

Continuity of care is consistent treatment over time by the same healthcare professional or small healthcare team (family or in-home caregiver) is considered ideal for Alzheimer’s patients.

Caregivers of people with dementia cite important emotional rewards, but many are also burdened with the significant emotional, physical, and financial toll of caregiving  Also needing consideration is patient’s behavioral problems, such as agitation, aggression, and apathy, which are common in Alzheimer’s disease Dementia. They are disabling for patients and among the most troubling behaviors for caregivers.

Caring for a loved one at home may provide continuity but is particularly challenging, with additional emotional strains.  This can lead to caregiver fatigue, depression, and anxiety. In addition, caregivers can face economic stress from lost income and the expense of attending to someone with dementia.  Eventually, caregivers and families may be forced to seek institutional care, as care at home becomes too difficult to continue.  If affordable, institutional care offers professional care, and with a realistic view, better health for a caregiver. 

As AD progresses, pneumonia, febrile (fever) episodes, and eating problems are frequent complications for dementia patients.  These complications are associated with high 6-month mortality rates.  Distressing symptoms and burdensome interventions are also common among such patients.  Patients with health care proxies (enter hospice care), who understand the prognosis and clinical course, are likely to receive less aggressive care near the end of life.

In his book “ABC’s of Alzheimer’s Disease – A Shared Reality by Me and My Shadow”, Bruce offers “outside the box” ideas and recommendations to address these type issues. 

Non Verbal Communication 

  • The article shares hindsight views of care decisions associated with the impact of non-verbal communication from my wife’s traumatic experience when she could not communicate in a medical situation.eplace.

It started August 23, 2017 with confusion, walking, and balance problem.  Suspicious of a stroke, which it was not, led to a trip to hospital ER.  Diagnosis was a Urinary Tract Infection (UI).  It was treated with Ciprofloxacin (Cipro) and we were sent home.  This was the first impact of non-verbal communication because my wife was unable to communicate her pain.  Actually, as we learned later, the infection in the urine was probably due to an abscess, that began on her appendix.

After completing the seven days of Cipro, there was no improvement.  The primary care doctor prescribed seven days on Ampicillin as well as a home health nurse to monitor and arrange therapy.  On September 14, 2017, three days after completing the ampicillin and not having had a bowel movement for 5 days, Mira Lax was given in accordance with an as needed memory care order.  The care nurse came on September 15, 2017 and recommended she go to the hospital because of an impacted colon.  This time we went to different hospital ER where they determined through a CAT scan that the problem was an abscess on the appendix that ruptured. After being admitted to the hospital, a team of doctors assessed her condition (now midnight) and prepared for surgery in the morning..

The ER surgeon removed ths appendix with an incision due to the abscess and cleaned the area.  After surgery, the surgeon confirmed that the abscess was probably the original problem and that the Mira LAX triggered the rupture.  Lack of patient communication from Alzheimer’s Disease (AD) and/or Dementia creates uncertainty for all involved.  It was obvious that many (not all) medical staff are not trained for non-verbal communication patients.

My wife was discharged on September 19, 2017.   On September 22, 2017, the care nurse sent my wife back to the ER with a heart rate of 149.  The ER team determined that she had a blood clot in her leg that went to the lung as a pulmonary embolism.  They immediately put her on Heparin (blood thinner) and many other drugs as they were taking precautions.  Infectious disease and hematology specialists were added to the team of doctors due to concerns for blood infection possibility.  Blood culture came back negative.  To prevent further clots going to the lungs and heart, a stent filter was installed through the groin.  This time my wife was discharged to Skilled Nursing care on September 28, 2017 and then back to the Memory Suites on October 5, 2017. 

Should the first attending doctor for the appendix discharge have ordered compression therapy for the legs, considering her non-verbal condition and sent her to Skilled Nursing rather than allowing her return to memory care?  Was this an example of “lack of training” for demented patients and non-verbal communication? 

Dealing with AD – Dementia and Non-Verbal Communication.


            There is love for one’s partner and there is realism.  They are not separate.  Realism is that when a love one reaches the Alzheimer’s dementia stage of the disease, they have lost the majority of neurons in both short and long term memory portions of the brain. Then the disease attacks the brain areas that control motor area, fear, flight, or fight (amygdala), behavior, anxiety, depression (Limbic system), and control of personal hygiene. 

Everything to your love one is “at the moment” when you are with them.  Ten seconds after you are out of sight, you are out of mind.  For those with love ones in memory care facilities, you may leave with guilt feelings.  However, as soon as you are gone, your love one doesn’t know you were there. 

            Make your visit a success by treating your love one like you did with your newborn child as they grew.  You talk with them, kiss them, changed them, hug them, without receiving any feedback. I treat my love one that way.  I believe communication is with her eyes, smiles, the squeeze of the hand.  Keep providing positives of how you and your love one are good, happy, and how your love one like to help others or being a great cook. The key is attention and stimulating their ego.

I believe the brain stem still maintains a communication connection despite the lack of the destroyed memory.  This communication is like early humans before the larynx bone developed to provide voice sounds. With non verbal communication, caregivers have to become medical detectives. When your love one mood changes negatively, look for a physical problem.

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