Assisting the Person with Dementia. . . Understanding Their Communication Needs

“Time spent relating to people is mainstream to care and is not a diversion from other more important tasks.” Goldsmith Hearing the Voice of People with Dementia, 1986 - “Time spent relating to people is mainstream to care and is not a diversion from other more important tasks.” - Goldsmith, Hearing the Voice of People with Dementia: Opportunities and Obstacles, 1986. - Those who provide care need to encourage people with dementia in their attempts to communicate and do all that we can to facilitate our own communication with them.

4 Functions of Communication: 1. Expression of wants and needs. 2. Information exchange. 3. Maintenance of social etiquette. 4. Social closeness. - J. Light, 1988 - review the 4 functions of communication and reflect that the needs of people with dementia are not different. - we need to acknowledge that changes in the ability to communicate bring changes into relationships. - research done with family care providers (Hirschfield, 1983) suggests that care providers of people with dementia experience less gratification. It was also noted that care providers were observed to have 2X as frequent diagnosis of psychiatric distress. This was postulated to be related to the decline in mutuality (feedback) that they receive from the one they care for. - our goal as care providers then is two fold: 1. To contribute to the wellbeing of people with dementia by improving our communication with them. 2. Assist family/friend care providers in their communication with people with dementia so as to improve the wellbeing of both the person with dementia and the family member or friend who is engaged in care provision.

Communication Losses Experienced by a Person with Alzheimer’s Disease (1 of 3) At on-set: Takes longer to digest information Thoughts may wander from the topic Problems recalling names of people, places and things

Communication Losses Experienced by a Person with Alzheimer’s Disease (2 of 3) As the disease progresses: More complex words may be forgotten More generalization Loss of sense of message; more use of social phrases Difficulty in following verbal direction Difficulties in following written direction Less able to initiate conversation

Communication Losses Experienced by a Person with Alzheimer’s Disease (3 of 3) Near the end of life: Use of single words Communication is largely non- verbal

Illustration from Care to Communicate, Powell, 2000

Illustration from Care to Communicate, Powell, 2000

Communication is: 38% Tone 55% Non-verbal 7% Verbal - draw attention to proportion of communication that is based in words. - advocate for moving from a verbal to a non-verbal communication model. Activity: Divide group into subgroups. Using non verbal communication only, have them line up in order of their birth date by month and day. Debrief. - Socrates wrote saying that there are two worlds: the first world is imperfect impeded by the inept medium of speech; the second is a better world of perfection where things are communicated visually, without needs for words.

Use FOCUSED Communication: F - Face the person. O - Orient the person to the topic. C - Continue the same topic. U - Unstick by suggesting a word. S - Structure questions so choice can be recognized. E - Exchange ideas in daily conversation. D - Direct, short, simple sentences. - D. Ripich, San Antonio, TX, 1996. - FOCUSED communication reminds us all to use good communication skills in both our verbal and non-verbal interactions. - Face the person for eye contact and to establish that you are conversing with them. - Orient the person - if you are wanting to ask the person to come for a bath, have a towel; For mealtime, have an eating utensil or napkin. - Continue the same topic as long as the person is willing or participative. - Unstick by reading between the lines of the conversation and providing the assistance that makes sense of the communication. - Structure questions so choice is obvious and so the person can repeat the answer from the question. Only use questions with yes/no answers when a person is unable to connect with you otherwise. - Exchange ideas in daily conversation - keep the flow of information as normal and adult as possible. Do not cause loss of language skills to become speeded by lack of interaction. - As the situation changes, move to direct, short and simple sentences.

Principles of Meaningful Touch: 1.Respect the dignity and culture of the person. 2.Be aware of emotional content of touch. 3.Use socially appropriate touch. 4.Create awareness before touching. 5.Encourage environmental touch. - culturally, western societies extend less touch to adults then to children. This does not reflect a decreased need for touch. 1. Respect the dignity and culture of the person. - each culture has its own rules on personal space - this is called proxemics. There are cultures who are value a lot of physical contact such as: Arab groups, Latin Americans, and Southern Europeans. Non Contact groups are: Asians, Northern Europeans, Australians, North Americans, sub continental Indians and Pakistanis. - touch as adult to adult. - obtain permission to touch. 2. Be aware of the emotional content of touch. - touch gently. - distinguish between stimulating and reassuring touch. 3. Use socially appropriate touch. - engage in activities that involve natural touch I.e. dance, handshakes, grooming, manicure, massage. - encourage appropriate touch between peers. 4. Create awareness before touching. 5. Encourage environmental touch. - tactile experiences with materials in the surroundings, pets etc.

Finding Communication Solutions: Think Why? Think Avoid Confrontation Be Practical Clarify Feelings; Provide Comfort

Communication Behaviour: Repetitive speech Why: - person forgets they have asked question or received an answer; problem understanding. - person may have fixated on an idea. - impaired ability to speak leading to concern about being understood. Things to try: - provide answers calmly, using the same words. - redirect the person to an alternate activity. - listen with intent to understand.

Communication Behaviour: Calling out Why: - a physiological need. (I.e. hunger or pain) - feelings of fear, anxiety or loneliness. - overstimulation or boredom. Things to try: - check for physical needs. - provide reassurance and companionship. - lessen noise and busyness or provide activity as appropriate.

To Understand the Person’s Communication: Stop, look and listen. Focus on context, not content. Ask if you understand. Focus on right now. Know the person. Try, don’t lie. - Nancy Mace, 2005

Caring Communication: Builds trust. Provides reassurance. Shares the moment. Bestows dignity. - when care providers invest in communication interactions there are many outcomes: - Trust - the person trusts one who shares of themselves. - Reassurance - communication builds a feeling of safety. - Mutuality - communication allows the person with dementia to give ‘gifts’ to their care providers. - Dignity - taking time to communicate shows that you place value in and on the one communicated with. Knowing one is valued engenders dignity. - Enhances lives - by reinforcing that the person providing care and the one receiving care are really people who are doing life together.