The cumulative impact of dementia on caregivers

dementia-symptoms-and-brain changesWESTBOROUGH, MA January 20, 2015  The impact of dementia is no greater than on those who remain behind to care for those afflicted with dementia.  Typically, this may be a singular spouse who has chosen to care for their loved one through the insideous stages of dementia.  Often in direct opposition to adult children, who may be intellectually dispassionate about what should or should not be done for the affected parent. This can take an enormous toll on the health of the surviving spouse who is often filled with guilt and sadness as they witness their life partner slowly fade away alone and often without substantive, hands on support.  No greater sense of despair and futility exists as when the declining husband or wife can no longer remember a devoted caregiver or the memory of a shared life. Even worse is the tangle of doubt over what more can be done. Their futility is painful to see for those who provide care for the patients and the caregivers.

Dementia and Aging

Dementia is a disease that most people have heard something about.  There are several variants of the disease including Alzheimer’s, Lewy Body, frontotemporal, and vascular dementia just to name a few of those more prevalent.  Most know the cluster of functional changes that occur with the slow but progressive loss of neurocognitive function that often starts deep within the brain in the 6th or 7th decade of life.  It starts with something as benign as forgetting a conversation after just a few minutes or being momentarily lost in a familiar place in town.  As the condition progresses, patients are rendered more forgetful, lose appreciation for tasks like paying bills, personal hygiene, eventually unable to recognize loved ones and care for their own basic needs.  As with any life changing sign of debility it is often difficult to admit and usually more difficult to address.  Denial is a common first reaction when dementia is suspected.  And feared.

There are many myths associated dementia that are worth pointing out.  First, old age and dementia are not synonymous.  Patients always say to me “what do you expect I am 82 years old” when I first begin the assessment process.  Research according to the APA, has shown in the right environment memory should not fail solely on the basis of age.  Next, there are many conditions that mimic dementia but are fully treatable if addressed sooner rather than later.  Arguably, depression, for example, often mimics dementia because of the associated change in attention memory, and behavior.  It is far more prevalent than Alzheimer’s and has a very high rate of treatment success.  The third myth is that there is nothing that can be done to stave off the mental inopertivity of senility. Wrong. But one needs to take responsibility for personal well-being long before the grip of dementia has begun unraveling one’s neurocognitive infrastructure.  This includes regular exercise, mental stimulation, nutritional balance, and regular social interaction.  It would not hurt to continue working or volunteering just to keep yourself in physical and cognitive shape. And finally, dementia is not life’s inevitable end point – whatever the age.  80 is the new 70 – people are living longer.  There are currently 96,000 centenarians in the United States.  In 30 years there will be over one million people who are over the age of 100.

Caregiver distress

Caregivers of dementia sufferers themselves suffer greatly.  The daily care of someone with dementia drains the emotional reserve needed to replenish the “self” unless the depleted caregiver can find a healthy, restorative balance.  The surviving spouse is sometimes under great stress to keep a loved one in his home – out of a nursing home. They anguish with each dying day in witness of a withering of human spirit – once father.  The decision to admit one’s spouse to a dementia care facility conjures up images of the locked wards, vitriolic nurses, and exploitive, uncaring staff – another myth germinated in the guilt and self-recrimination of husbands and wives, and families who have forever tried and failed to slow the disease.  Signs of caregiver burnout include sleep disturbance, irritability, being on edge, anxiety, unrecognized anger, and personal neglect.  Eventually, the stress associated with being a caregiver will errode whatever well-being may be left unless supoprt and balance can be found. No easy task – especially when a selfless spouse wants only to have things the way they were.

In truth, long-term care facilities are equipped to take care of someone with dementia with a round the clock team of nurses and rehabilitation therapists.  Making the decision to admit the demented family member may be aided by a family physician, knowledgable friend, or trusted therapist. Day treatment programs in many areas around the country provide temporary respite.  They are a good first step in diminishing caregiver fatigue. They offer free time to caregivers for restoration of empathy and the needed emotional refueling that comes from seeing friends, family, or dinner out, or a Sunday mass.

The best way to handle a situation like this is to surround oneself caring friends.  It is okay to talk about how difficult it may have become.  It is not a betrayal to feel angry inside or to reach out to family for respite care.  The financial concern over caring for a patient with dementia is very real.  It is expensive care to get and not readily available across the country or elsewhere.  Some hospitals or clinics offer free dementia care workshops or support groups that can provide helpful information and knowledge that you are not alone.  Learn what services are available in your area.  Talk to people and restore your self and believe that you are worthy of a rest – if even a short one.

REFERENCE: APA (2015) http://www.apa.org/pi/aging/ memory-and-aging.pdf. Taken 1-18-2015.

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