The effects of disease can be frustrating and confusing for both the caregiver and the one cared for. Here are some ways to make things easier for both of you:

Keeping things simple

Too much going on at once or too much information to process at one time can multiply confusion, so:

• keep sentences short and focused
• if you need to ask questions, try keeping them close-ended (where the answer is yes, no, maybe, I don’t know, etc.)
• keep their attention by keeping eye-contact
• speak clearly and not too quickly
• present choices (thus maintaining a sense of dignity and independence) but limit options (to minimize any feelings of being overwhelmed)
• repeat information
• communicate in ways other than speech if language is a barrier (pictures, objects to serve as memory cues, etc.)
• break up tasks into separate simple steps
• reduce clutter

Establish or Keep Routines

A sense of security is created by a predictable routine, so if your loved one has their own schedule (e.g. a morning bath, an afternoon walk, church attendance on Sundays), it’s best to try and keep to those things as much as possible. You can establish new routines such as regular visits, or scheduled times for particular activities (such as dressing at the same time every day).

• don’t speak as though they aren’t in the room
• keep aware of your body language—even if you don’t show frustration in your voice, non-verbal cues can be enough to cause upset
• if they experience delusions or hallucinations, don’t argue or dismiss them, just respond to the feelings invoked and provide comfort and reassurance
• if they make mistakes or have accidents, don’t get angry; remain quiet and calm; remember that this is an adult suffering from illness, not a child requiring discipline
• allow as much independence as possible; plan activities to do together in which the process is more important than the result
• include them as much as possible in their own affairs: encourage them to take part in activities such as preparing food, setting the table, choosing what to wear (just don’t present too many options), and the like
• continue to engage them with activities they’ve always enjoyed
• help them to maintain friendships and family connections
• if religion or spirituality has been a constant in their life, keep that an active part of their life

As a neurologist, one of Sacks’ main themes is the part music can play in the treatment of diseases which affect the brain such as Parkinson’s and Alzheimer’s. He observes that because the part of the brain which responds to music is distinct from those areas affected by dementia and Parkinson’s, people who suffer from those conditions can often dance, sing, or relate with others in a normal way while the musical sense is being stimulated. People who have suffered a stroke and have difficulty communicating with speech are often able to sing.

He speaks of groups of patients with severe dementia who live in a terrible state of confusion and isolation, but will recognize a song being played and begin to sing together, inducing a feeling of calm and enabling them to bond with one another.

There is another case of 90-year-old Woody Geist who has Alzheimer’s and has problems with his memory and communication, but continues to be a successful soloist with his a cappella group, The Grunyons. A woman with Parkinson’s who is otherwise immobile will ‘come to life’ for the length of time it takes for Chopin’s Fantasy in F Minor to play in her mind.

Music can help restore Alzheimer’s and Parkinson’s patients to themselves for a while, and Dr Sacks says music therapy is crucial for them. He says you don’t need a music therapist; even playing music on an iPod can make a huge difference.