Description

Dementia is a family of diseases, with many causes (forms or types). The most common is Alzheimer's disease (also called Senile Dementia). Also common is Vascular Dementia (or Stroke Related Dementia). Features of this Dementia may include an inability of a person to express themselves while retaining their ability to understand (expressive aphasia), or the person may have lost both the ability to express and understand words (global aphasia).

Less common are Pick's Disease (or Fronto-Temporal Dementia), Parkinson's Dementia, and Creutzfeldt-Jacob Disease (or Mad-Cow related Dementia). In Pick's Disease, behavioral issues are more prominent, as people lose their ability to control urges and therefore social interactions become inappropriate.

Dementia manifests itself as mental, emotional and physical loss that is insidious, irreversible, slowly progressive and eventually fatal, however quality of life is important and common symptoms can and should be addressed.

Helpful tips

Safe Ambulation and Transfers

• Observe for gait changes and instability. Can the person weight bear, could a walker or wheelchair be helpful?
• Would a short trial of Physical Therapy be appropriate or helpful?
• Proper nonskid footwear (shoes or socks) should be worn.
• If your gait is unsteady, obtain an assist device such as a cane, a four legged cane, a walker, or a wheelchair. Do not take any unnecessary risks which may result in falls.
• People fall when going from one surface to another-pickup all throw rugs, de-clutter the passage ways, remove electrical cords, etc.
• Make sure floor surfaces are dry and clean (clean up spills).
• Ongoing assessment of the person's ability to safely walk and transfer is needed. When fall risk exceeds the ability of the person to walk and transfer safely, the person needs to be cared for in bed.
• Discuss changes in ambulation and transfers with your medical provider. If the person is wandering around the home, make sure all doors leading to the outside and medications are locked with a key lock. Consider alarm /security services. Put away all breakable, sharp objects, and remove all household cleaning products that could be harmful as swallowed.

Eating and Drinking

• Observe the person's ability to chew and swallow. Most people will do best with soft, moist foods. Breakfast is usually the best meal of the day.
• Make sure that the person's dentures or partials are properly placed and that they still fit.
  Provide/assist with daily oral care. As people lose weight, dentures often do not fit as before. See your dental provider.
• Coughing, choking, or recurrent pneumonias may be an indication that there is an inability to swallow safely. Discuss with your medical provider, a swallow evaluation may be necessary, followed by a meeting with the dietician to discuss safe feeding techniques.
• Caloric needs decrease as activity levels decrease, it is never a good idea to force feed anyone, as it increases the risk for aspiration, and causes increased agitation and combativeness in people who do not understand what is going on. Breaking up meals into 5 smaller meals throughout the day are generally better tolerated than three large meals.
• Thickening liquids may reduce the risk of aspiration, Thickeners are available at drug stores and grocery stores. Discuss with your medical provider regarding the consistency which would be best. Other ways to increase fluid intake would be popsicles, ice chips, melons, soups, gravies, sauces and jello.
• When feeding sit at or lower than the level of the person being fed, to prevent aspiration.

Behavioral Issues

• Keep the environment calm and peaceful, make sure room temperature and lighting are acceptable to meet the person's needs.
• Make sure the person is aware of your presence. If they are sleeping give them ample time to awaken.
• Always explain to the person what you are doing before you do it. Talking in a soft voice and making sure that the person sees you, prior to giving care will enhance cooperation and minimize combative behavior.
• If behavioral issues are consistent, discuss strategies to make care giving easier, with your primary medical provider. Medications may be necessary. Make sure that you understand when to medicate, how much to give and the possible side effects. Medications are helpful when used effectively as prescribed.
• Observe to see if hallucinations or delusions are present. Inform the medical provider as these symptoms may require different medications.
• Observe the timing of behavioral issues, as this may indicate "sun downing" and require proper timing of medication administration. Discuss this with the medical provider.
• Observe for nonverbal signs of pain, constipation, urinary retention and urinary tract infections, as these conditions may also cause combative behavior.
• Recognize that any changes in the care routine including who the care givers are or absence of family may trigger behavioral changes. Be supportive, comforting and allow expression.
• Medications commonly prescribed for agitation and combativeness often cause sedation, uncontrolled jerking movements of the extremities, and/or rhythmic movement of the tongue. Observe for these symptoms and discuss pro and cons of continuing these medications with the medical provider.
• People with earlier stages of Dementia, especially those with vascular dementia who have lost the ability to communicate effectively and who are still capable of recognizing their loss of independence often become very frustrated. This may also result in combative behavior. Recognizing and acknowledging their frustrations (as well as your own) may also be helpful. Creating and adhering to a toileting, bathing, meal time, sleeping regime may alleviate some frustrations.

Discussion

Because Dementia is a progressive disease, planning for the care that will help manage the symptoms of this disease must be ongoing. An individualized plan of care needs to be developed with ongoing modifications to meet the changing needs both the person with dementia as well as the person(s) providing the care. Caregiver fatigue is a reality and must be addressed in a real way. Team with medical providers and community support systems to allow for needed respite opportunities.

Caring for people with Dementia is a marathon, not a sprint. Asking for help and taking needed breaks does not mean you are not a good caregiver. No one can do it alone. The foundation to managing dementia begins with the proper diagnosis of the type of dementia and understanding its specific features.

Related topics

Bedside Care
Discussing dementia