5. Communicating with families of people with dementia and other caregivers.

Family members of persons with dementia often have a long history of interacting with the person and have long-standing habits and patterns of interaction to which they give little or no thought until illness related difficulties become evident. Because dementia brings about considerable changes in cognitive and psychosocial functioning, family members may find that the communication skills and/or awareness they used to rely on are no longer adequate to meet the new challenges they face (Farran, Loukissa, Perraud, & Paun, 2003).

It is fundamental that there is good communication among the individual living with the disease and his or her health care proxy decision-maker, family caregivers and entire care team. In order to achieve this, there are some aspects to be taken in great consideration:

1. Family carers have their own needs within an interaction beyond facilitating the person with dementia’s communication.

2. Families need to know the symptoms of dementia and understand the progression of the disease. This is why holding regular care planning meetings is important. As dementia progresses, these moments provide opportunities to create understanding about a person’s changing needs and to discuss the implications of those changes on care choices.

3. Regular contacts should be kept through home visits, phone calls, or (if available and appropriate) email, text messages or other technologies.

4. People have different degrees of “health literacy.” People may need help to understand some health concepts, terminology, or the implications of treatment options, which should be explained to them with simple and plain language.

5. Professionals in the field of dementia should always use appropriate, respectful, inclusive, non stigmatizing language. The words we use can influence others’ mood, self-esteem, and feelings. A casual misuse of words or the use of words with negative connotations when talking about dementia in everyday conversations can have a profound impact on the person with dementia as well as on their family and friends.

6. It is also important to remember that words and phrases that are appropriate in one community may be offensive or of no meaning in another community. It is important to be aware of the cultural background of the person, family or community so that you can use the most appropriate language. It is always advisable to seek guidance from culturally and linguistically diverse communities on appropriate terminology where possible.

7. What, how and when information should be delivered to family and other team members should be accurately planned.

8. During transitions of care, that is transition within settings (e.g. within the home care team), between settings (e.g. between a hospital and home) and across health conditions (e.g. curative and palliative care), communication — between the person with dementia and his or her family, within the home care team, and among all providers involved in caring for the person — is especially important to ensure medication safety, understanding of the care plan, clarity of roles and responsibilities, and care coordination.

References:

Alzheimer’s Association Campaign for Quality Care (2009), Dementia Care Practice Recommendations for Professionals Working in a Home Setting, Alzheimer’s Association.

Dementia New Zealand (2017), Communicating with people with dementia, available online at https://www.dementia.nz/

Alzheimer Society of Canada (2016), Communication in Day to Day Series.

Dementia Australia (2018), Dementia Language Guidelines, available online at www.dementia.org.au

Farran, Loukissa, Perraud, & Paun (2003), Alzheimer’s disease caregiving information and skills, in Research in Nursing & Health 26(5):366-75

Goffman E., (1967), Interactional Ritual: Essays on Face to Face Behavior, New York, NY: Pantheon.

Hamilton H. E. (1994), Conversations with an Alzheimer’s Patient: An Interactional Sociolinguistic Study, Cambridge: Cambridge University Press.

Hydén L. C., Plejert C., Samuelsson C. and Örulv L., (2012), Feedback and common ground in conversational storytelling involving people with Alzheimer’s disease. Journal of Interactional Research in Communication Disorders, 4, 211–247.

Kitwood, T. (1997), Dementia Reconsidered: The Person Comes First, Open University Press.