In a very informative book about dementia Marc Agronin, MD., addresses one of the areas that causes problems for everyone, namely the ‘difficult’ caregiver. Dr. Agronin, a nationally known geriatric psychiatrist, writes about their disruptive tendencies. He describes the difficult caregiver as one who, “struggles with both informal and formal supports, including their friends and family, professionals, and staff members at supportive agencies, programs, and institutions”.
There are so many different reasons for poor caregiver dynamics whether between caregivers, other health professionals and/or care facility staff. We all bring our separate agendas, personalities, needs and expectations to our roles. At times these can clash with those of health professionals and it can leave the caregiver, who is often the spouse, feeling very isolated. From the perspective of healthcare staff the provision of care to the patient can become a stressful experience as they feel every action or decision they make is being minutely scrutinized.
Difficult caregivers sometimes have their own personality or mental health issues. These can manifest themselves in inflexibility or poor coping mechanisms especially when a loved one becomes ill and dependent. Their relationship with the Alzheimer’s patient may, over time, have undergone a 180 degree role reversal. Anger, or inappropriate demands are their most common reactions. Not uncommonly they come away from interviews and encounters feeling as drained and unhappy as the staff they communicate with.
I have known professional staff actually hide from people they perceive as difficult. They have employed tactics such as hearing imaginary phone calls that need attending, or asking other members of staff to call them urgently when such a person arrives in a care facility. Both parties feel dissatisfied and serious care issues may be overlooked.
But are difficult caregivers just a nuisance, or do they help to keep the professions on their toes? We all know of reports and legal cases resulting from perceived inadequate medical and nursing care. Sometimes these have highlighted major deficits in some care services. So whilst dealing with an insistent or picky relative or caregiver can be challenging there is no doubt that their dedication and advocacy has sometimes changed State or National legislation to avoid further abuses of care.
One of the best ways I have seen of working with the genuinely difficult (i.e. needlessly awkward or provocative) caregiver, is to allocate specific medical and care staff in order to see them at regular meetings. These can be for a set period of time. Careful recording of care treatment programs and outcomes gives a written record for the caregiver to see. Being listened to and acting on appropriate concerns often makes for positive change. The staff members can be rotated after a few months, but not too often.
And, as Marc Acronin points out, the clinician should remain empathic and be an open listener providing honest communication. In Institutions administrative and legal staff also need to be involved.
Sharepost Sources: Agronin M. E (2011) How We Age: A Doctor’s Journey into the Heart of Growing Old . Da Capo Lifelong Books.
Agronin, M. E. (2004). Dementia a practical guide. New York: Lippincott Williams & Wilkins.