Interpersonal skills and collaborative team working, in supporting persons with dementia and their family. Pat Deeny

Structure of Session  Key facts about communication and people with dementia.  Communication needs of people with dementia.  CONCERNS regarding communication.  FAMILY needs in relation to communication.  Activity and reflection.

Key facts.  Alzheimer's disease and Vascular dementia diminish ability to communicate.  People can feel isolated from the social world.  Apathy and social withdrawal develop.  Family burden is increased due to language deficits, communication issues and problem behaviours.  Quality of life for all is strongly influenced by communication and social relationships. ( Haberstroth et al, 2011)

Communication needs.  feel a real sense of identity and dignity.  lead on the conversation for once!  have non-verbals, eye contact attended to.  feel a sense of belonging, have a laugh, fun; to participate in social activities, dance, sing, poetry.  be consulted and not always be ‘tested’.  experience touch as before, hugs and kisses.  appreciate the natural environment and the arts.  sit in silence, pray and be spiritual.

 C: Comprehensive Care Plan that takes full account of personal biography (memory box\life history); everyone must read this plan and\or be familiar with the memory box.  O: Observe first. Wait!!! Only start the conversation if you think the person really needs prompting.  N: Non-verbal and eye contact. Most communication is non-verbal. Use it. CONCERNS

 C: Choice and participation. Facilitate choice in relation to little but important things i.e. clothes, food… encourage social participation, dance, music, good craic.  E: Expressive touch. Shaking hands, normal greeting, touch back of hand, fore-arm and shoulders, kiss on cheek and hug when appropriate (refer to life history, culture, gender and preferences). CONCERNS

 R: Rapport. Very individual, wait for rapport to develop. Speak slow and clear but NOT too slow. avoid complex sentences. be aware of ‘personal space’. reflect the person’s non verbals, eye contact, smile, laugh, sing... don’t have too many items at once, wait for reply, Know slang words or colloquial descriptions. CONCERNS

 N: Natural environment. Use the natural environment in communication, plants/flowers\insects/animals/ provide a sensory experience.  S: Spiritual. Sitting in silence, appreciating the person’s identity, an awareness of the person’s background, being able to talk about the person’s life, the arts, listening to music, reading, poetry, talking books, religion, saying prayers or reading Bible, reading Koran, using prayer mat. CONCERNS

MacKinley and Tevitt, 2010, p 396 S: Spiritual ( reminiscence ) Relationships The natural environment The arts Religion S PIRITUALITY : is ultimate meaning mediated through

FAMILY needs.  F: Feelings of loss: Carer feelings of loss, a feeling that he\she has ‘already gone’, the long good bye.  A: Adapting to guilt and isolation: prevent distress, fatigue and exhaustion, promote tolerance don’t expect acceptance.  M: Meeting as a group: Group meeting with Alzheimer's Society very helpful. Needed to beginning planning care rota. Recognise that there will be ‘conflicts’ within families. Begin discussion on, resuscitation and enteral feeding.

FAMILY needs.  I: Information on communication issues: families need assistance and advice regarding communication. Information about ‘illusions’ and how to react.  L: Listening not talking: Family need to see themselves as; equal partners in decision-making and have their concerns listened to. No ‘power plays within Multidisciplinary Team’. Don’t be patronising!!! More listening than talking.

FAMILY needs.  Y: Yīnyáng. It is all about balance, about creating space to find meaning, being holistic and spiritual. Recognising that the person with dementia will have ‘good days ‘ and ‘bad’ days’. Continue engagement with the natural environment, the seasons, human relationships. Use the arts and religion to foster this.

Preliminary conclusions  Need for improved understanding of interpersonal communication issues in dementia.  Greater awareness of the CONCERNS.  Improved awareness of FAMILY needs.  Everyone needs to ‘reflect’ on communication. “the little things matter” “be more holistic” “think spiritual and you will be”

The mask!  Did you know the word ‘person’ comes from the Latin persona which means “mask”?

The mask activity  Groups of four.  First person wears a mask throughout. This person has dementia (late or early stages).  He/she begins tells a ‘mixed up’ story in the present tense (5 mins). Can be about anything..a birthday party..a special day. Maybe his\her own birthday, we don’t know. Use colloquial words. Laugh, cry, sing, what ever emotion is appropriate. Everything must make total sense to the person with the mask. Have an illusion if you wish. Talk about life, your life!

The mask activity  The second and third person take the role of the family (daughter/ son). Both listen to the person with the mask. It is Ok to be unsure, a little anxious, puzzled.  The fourth person takes the role of the health professional, quietly listening\observing everyone, taking notes, may prompt on ideas i.e. eye contact, expressive touch.  After 5 minutes everyone stops and gives feedback. What did you learn?

Useful Reading  Haberstroh J, Neumeyer K, Krause K, Franzmann J, Pantel J, (2011) TANDEM: Communication training for informal caregivers of people with dementia.: Aging & Mental Health 15 (3) pp TANDEM: Communication training for informal caregivers of people with dementia.  Hammar LM, Emami A, Engström G, Götell E, (2011) Communicating through caregiver singing during morning care situations in dementia care. Scandinavian Journal Of Caring Sciences 25 (1) pp Communicating through caregiver singing during morning care situations in dementia care.  Mackinlay E and Trevitt C,(2010) Living in aged care: using spiritual reminiscence to enhance meaning in life for those with dementia. International Journal Of Mental Health Nursing 19 (6), pp Living in aged care: using spiritual reminiscence to enhance meaning in life for those with dementia.  Siemens I, and Hazelton L, (2011) Communicating with families of dementia patients: practical guide to relieving caregiver stress. Canadian Family Physician. 57 (7) pp Communicating with families of dementia patients: practical guide to relieving caregiver stress.