Patients suffering from various stages of dementia can be some of the most challenging to deal with. This holds true for loved ones as well as nurses and health care workers caring for dementia patients. Loss of short-term and/or long-term memory can cause an abundance of other symptoms including cognitive abilities, depression, anorexia, gait abnormalities, mobility issues and the ability to manage their own (ADLs) activities of daily living. Patients can become paranoid and aggressive. Or they can become withdrawn, docile and even catatonic.
Understanding the patient’s needs
It’s difficult for dementia patients to understand and to respond appropriately to questions or commands. In the early stages, they may be able to answer simple questions and follow a few very simple commands. But as dementia progresses, this becomes less and less likely. It can be impossible for them to make their needs known and therefore difficult to understand how to best care for them.
Dementia often manifests in behaviors because the patient is easily frustrated or even frightened by circumstances. These behaviors include picking, rocking, making guttural noises, to agitation accompanied by aggressive and combative behaviors. In some patients, these behaviors happen with predictable stimuli and sometimes completely without provocation. New situations and circumstances are understandably stressful for anyone, but for those with dementia, even the slightest change can represent a huge barrier for them.
Types of Dementia
There are several types of dementia including Lewy Bodies which is closely related to Parkinson’s disease; Vascular Dementia which is related to a lack of blood flow from such causes as stroke or TIAs, head trauma or traumatic brain injury (TBI), atherosclerosis or other vascular disease; Frontotemporal Dementia (FTD) or Pick’s Disease which most often occurs before 60 years of age, and Alzheimer’s Dementia. The World Health Organization (WHO) estimates Alzheimer’s Disease (AD) accounts for 60-70% of all dementias.
Currently, WHO estimates 50 million people worldwide have some sort of dementia. By 2050, WHO estimates that the number will triple to 152 million people. Dementia is the 7th leading cause of death and worldwide costs related to dementia exceed $800 billion per year. Although symptoms can be managed with medications and non-pharmacological modalities, there is no cure for any dementia. All are progressive diseases that become complicated by co-morbid diseases and complications leading to death.
Risk Factors
In researching cures, scientists have been able to identify risk factors that contribute to dementias. These include age over 65 although (almost 10% of dementias are identified in adults under 65) tobacco use, unhealthy diet and obesity, alcohol abuse, physical and cognitive inactivity, diabetes, Hypercholesterolemia, depression, hypertension at midlife, social isolation and low levels of education.
Preventative measures include aggressive management of diabetes, hypertension and cholesterol levels as well as managing weight. Increasing physical and cognitive activities are also effective measures in helping to prevent dementia.
Nurses who are caregivers for their own aging parents or loved ones and those who work in geriatric settings can focus on continuing education for nurses to gain insight into recent research and developments with dementia and Alzheimer’s disease. Educating caregivers and family members is an important task for nurses who should be up to date on treatments and prevention.
Treatment and Management
There is no cure for dementia, but with quality medical care and caregiving, symptoms can be managed, and progression slowed. Dementia is the 7th leading cause of death, but progression to mortality can take up to 10 years. The goal is to maintain as much independence as possible, prevent co-morbid complications, and decrease the burden on caregivers.
Memory loss and cognitive decline are two of the most challenging issues. Weight loss of 10% of body weight can happen rapidly due to the fact that dementia patients forget to eat. They often think they just ate and will ignore even strong hunger pains.
As dementia progresses, eating can become difficult as they begin to forget to swallow and can pocket food and choke. Swallowing can become difficult and foods need to be chopped or pureed. Liquids often need to be thickened. Feeding a dementia patient an adequate amount of food can take 45 minutes to an hour. This is a slow and tedious task for caregivers who may become agitated and frustrated themselves.
Planning for this and learning to multitask while feeding is an option many don’t even consider. Watching TV, reading or even continuing to cook meals while feeding one to two bites intermittently can ease the burden as long as the primary focus remains feeding. It’s important to keep an eye on them so that choking isn’t an issue. Falling asleep is also while being fed is also an issue. Keep meals healthy but simple. Too much food on a plate can be very confusing. Using a bowl with one type of food at a time can solve this. Divided plates with small portions can also help.
Keeping Patients Active
As dementia progresses, patients will lose cognitive and physical abilities and struggle with all ADLs and IADLs. Activities of Daily Living include feeding, bathing, dressing/grooming, ambulation, transferring, and toileting/continence. Instrumental Activities of Daily Living include managing finances, communication via telephone or mail, housekeeping and home maintenance chores, shopping and meal preparation, transportation and managing medications. Support and Assistance will vary with the severity of need. Remember that patients who have been fiercely independent will not always give in to accepting help easily despite memory loss. They can become resistant, aggressive or combative. They may not remember they need help; nor have a clue as to why. Take things slowly and explain each step. Wait for them to agree and move forward. Some will require some premedication with meds such as Ativan or Haldol.
Encourage them to continue to do as much as possible for themselves with stand-by assistance and supervision. Again, these tasks may take three times as long as they normally would. Patience is essential. Frequent checks on them will help to prevent falls or other injuries. Don’t expect them to remember they need to use a walker or cane or call for assistance. That thought may make sense at the moment of discussion, but it’s gone from their brain as soon as you leave the room. Tab alarms, bed alarms, and fall mats should be used. Toileting every 2-3 hours can also eliminate some of the urgency to get up and try to use the bathroom unattended. Restraints of any sort are not acceptable for safety reasons and family and caregivers should be educated on this.
Routines help to keep things running smoothly, but always having a contingency plan when things go south quickly will also lessen the burden. Surprises are not fun and for patients whose cognition is damaged, it can trigger an undesirable response. Moving too quickly or trying to get them to do something right now can be a mistake. Don’t sneak up on them or come up from behind without letting them know you’re there.
Other complications to expect
Confusion due to memory loss can be challenging. Don’t argue with them. Gently correct anything that’s a danger or simply change the subject and distract them. If there’s no harm, it’s OK to agree. Giggle silently at the funny response, but don’t judge.
Routine hygiene and skin care to prevent breakdown are essential. Dementia patients especially those with Alzheimer’s are prone to skin breakdown and can become septic quickly. Mobility is important; even just a change from the bed to a wheelchair and sitting in another room stimulates the brain. A reclining wheelchair can be used for those inclined to try to escape. Participating in activities, adult day care programs, listening to music especially familiar hymns or music from “their generation” can be stimulating and comforting. Being read to can also be calming and comforting even though they may not be able to respond, understand, or remember the plot 10 seconds later.
Pet therapy can also be comforting and distracting for even some of the most combative patients, although safety for everyone takes precedence. Petting an animal or watching play can be heartwarming especially to animal lovers missing their pets.
A sudden change in levels of confusion can often indicate a urinary tract infection. Immobility can cause constipation and often led to pneumonia. Geriatric patients, in general, are susceptible to any virus or infection especially in assisted living and higher levels of care where residents live in close quarters. TB screening and flu, pneumonia or shingles vaccines are preventative measures to be considered.
Patience and self-care
Caring for dementia patients can be extremely draining both physically and emotionally. Self-care cannot be overlooked. Sharing the burden, delegating responsibilities, and taking mental and physical breaks are essential. Replenishing the soul is absolutely necessary in order to keep going and providing quality care.
