When Family Caregivers Deal with Subjective Cognitive Decline, Alzheimer’s and Dementia
By: Amy Blackburn, Msg
Tags: Healthcare Directive, Caregiving, Alzheimers, Caregiver Burden, Dementia

For many, the reason for needing long-term care, in-home care, assisted living, or memory care will be because of dementia, which is abnormal deterioration of the brain. The most common type of dementia is Alzheimer’s, and other forms are Lewy body, frontotemporal, and vascular dementia, resulting from a stroke. Over 100 types of dementia exist, and sometimes people have multiple forms of dementia along with different symptoms associated with each. Researchers have found that changes in the Alzheimer’s brain can occur up to 20 years before symptoms, such as memory loss, are even noticed. Some of the initial changes consist of amyloid plaque buildup (outside of the neurons), tau tangles (inside the neurons), and brain shrinkage.

No medications slow or stop this neuron damage that occurs in the diseased brain. The only medications that exist for Alzheimer’s might work temporarily and target symptoms associated with dementia such as agitation, depression, anxiety, and sleep disorders; but the side-effects soon set in. The more successful clinical trials focus on possible prevention or slowing the progression of Alzheimer’s. These studies focus on a combination of lifestyle factors such as exercise, nutrition, managing chronic conditions (e.g., high blood pressure, high cholesterol, diabetes, obesity), consistent sleep, stress management, and cognitive stimulation (e.g., formal education, learning something challenging such as a new language or instrument, and socialization). Focusing on all these lifestyle factors is the most promising for the prevention of Alzheimer’s and slowing progression during mild cognitive impairment (MCI) or in the early stages of dementia. But even when people start exercise or nutrition programs, these alone can be very beneficial for the brain.

Subjective Cognitive Decline

If you are in your mid-forties or fifties and have had trouble remembering how to do something you have always done or are suddenly forgetting a password you have used for many years, you might be experiencing subjective cognitive decline (SCD). There are no tests for determining SCD — it is something only you would know. It is the first indication of Alzheimer’s disease; and not necessarily the symptoms of dementia that are experienced much later. Mild cognitive impairment (MCI) is the diagnosis that sometimes precedes Alzheimer’s dementia, but people are still able to function in normal daily activities and at work.

Once people have dementia symptoms, of any type, family caregiver burden intensifies in all aspects — emotionally, financially, and physically. Relationship roles and identities change for family caregivers and care receivers. The quality of the relationship is affected, and communication diminishes, which adds to caregiver burden and stress.

Progression through the different stages of Alzheimer’s disease and other types of dementia can vary, depending on whether your loved one has other major chronic diseases (e.g., heart disease, diabetes), lifestyle (e.g., excessive alcohol, drug use, smoking, or being sedentary), and environmental factors (e.g., isolation, air pollution). People with formal education, especially college graduates, can “hide” symptoms longer. By the time dementia symptoms such as memory loss or language issues are noticed, they could be much further along in the disease than you or the doctor might think. People with dementia do this when their brains create new neurological pathways while old neurons are dying. Your loved one can “fake it” that everything is okay — not necessarily a benefit to the family caregiver or doctors treating them because one day they will suddenly be in advanced stages of Alzheimer’s disease.

Family caregivers state repeatedly that being educated and trained on dementia symptoms, including the progression of the specific types of dementia and diseases is what makes the difference in handling care for a loved one. More than anything, patience, and understanding are enhanced and when those unexpected situations arise, family caregivers can provide care with empathy. For professionals, taking virtual dementia-type training can help with this type of empathy when working with families as well.

Important Documents before a Dementia Diagnosis

Most people do not prepare for long-term care, and one of the most important communication tools as part of that preparation, particularly for dementia, is having proper documents in place. These include health care directives, Physician Ordered Life-Sustaining Treatment (POLST), Do Not Resuscitate (DNR), and Power of Attorney (POA). Each of these documents is for if/when you are incapacitated and unable to speak for yourself. These documents should be finalized for your loved one, as well as yourself!

Once someone has a diagnosis of dementia, it is too late for the wishes of that person to be recognized because a signature would be invalid. A family member might have an idea about what a loved one wants, but the best way to know is to have a person with full mental and cognitive abilities write each detail of long-term care and end-of-life desires (including hospice care) and then sign it as a legal document. Nothing is more comforting than knowing for a fact your loved one’s wishes have been communicated to you verbally and in writing — for reminding and clarification later when you are stressed and having to make urgent decisions for your loved one.

Being a family caregiver can be complicated and difficult, and many unexpected situations can arise. What has been described in this article adds more reason for family caregivers to contact local caregiver support services and programs so that social services professionals can assist them in navigating their options.