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Providing Care and QOL for the Person in the Late Stages of Dementia Utilizing the Allen Cognitive Disabilities Theory

Providing Care and QOL for the Person in the Late Stages of Dementia Utilizing the Allen Cognitive Disabilities Theory

Persons performing in the late stages of dementia begin to lose the ability to communicate with words, to ambulate, to use familiar objects (e.g., toothbrush or a comb). In the late stages the person requires extensive assistance for basic care activities.

Although functional skills are lost, the person continues to have the ability to feel fear or at peace, loved or lonely, sad or happy and secure.

Persons performing in these late stages still have remaining abilities. These are the abilities described in Allen Cognitive Levels 1 and 2.

Persons performing at Allen Cognitive Level 2 (Postural Actions) have the cognitive ability to hold their body up against gravity, that is the ability to sit unsupported, stand, make gross motor movements, and walk (although unsteady). They are able to step, rock, and sway. They are able to communicate with a few words, and sing highly familiar songs; however the majority of their communication is done through vocalizations, gestures, facial expressions, movement, and behavioral actions. They are able to bring finger food to their mouth. They are able to assist in basic care tasks by making gross motor movements.

It is important to remember that their responses to stimulation and/or directions are much delayed, and their sense of postural security is paramount for them. Therefore, to facilitate abilities, the care partners must ensure that the person feels safe, posturally secure, and the care partners must wait for that delayed response.

In addition, the person will respond to activities/stimulation best when the stimulation is of interest or is valued by him or her. Tap into who that person is; know his/her history, relationships, accomplishments, values, and interests.

Facilitating all these abilities will generate Quality of Life for the person performing at Allen Level 2 as well as prevent or minimize common complications (e.g., falls, contractures, aspiration, and resistance to care).

Recommendations:

  • Provide tactile cues and demonstration of gross motor movements (when assisting with ADLs, or any activity, such as kicking a ball, batting a balloon).
  • Use music to facilitate movement.
  • Provide opportunities to stand and sit and stand and walk.
  • Facilitate self-feeding skills with finger foods (usually for partial meal) and proper cues and setup. Provide snacks that are finger foods.
  • Facilitate some ability to follow a one-step direction by using verbal, visual, and tactile cues (although ability to respond to external cues will be limited).
  • Enhance communication between client and care partner by training staff/family to understand all methods of communication and teaching staff/family how to communicate slowly, etc.
  • Encourage verbalizations and/or vocalizations through music or other interest of the person; e.g., poetry or prayers.
  • Encourage activities—emphasize gross motor activities, engage in sing-a-long, and reminisce through sensory stimulation approach.


Persons performing at Allen Cognitive Level 1 (End Stage dementia) are bedbound and require total care. However, this person still has the capacity to experience and express emotions and abilities still remain.

The persons performing at Allen Level 1 are able to respond to stimulus. This is observed in facial expressions (smiles, movement of eyes, eye brows, and lips), in turning of the head to locate the stimulation, vocalizations and spontaneous movements of the body and extremities, and in changes in respiration.

As in Allen Level 2, the person has a much delayed response time, and the person will respond best to stimulation that is meaningful to that individual.

Again, facilitating these abilities, tapping into who this person is, will promote quality of life, and may prevent or minimize common complications.

Recommendations:

  • Promote abilities through personalized sensory stimulation. Use all the senses (e.g., provide music or sounds of things the person loves, provide flavors and/or smells the person loves, provide visual stimulation, including your face, very close to the person's face, provide touch and soft articles related to the person's interests and/or wrap the person in a soft blanket).
  • The most powerful interventions are those which ease discomfort and provide meaningful connections.


Surrounding a loved one with pictures and mementos, reading aloud from treasured books, playing music, giving long, gentle strokes, reminiscing, and recalling life stories promote dignity and comfort all the way through life's final moments.

Acquired April 16, 2010  at: http://www.helpguide.org/elder/alzheimers_disease_dementia_caring_final_stage.htm

Understanding the abilities that remain in these later stages of dementia allows us to maintain that connection with the individual, promote quality of life, and reduce complications.

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