Losing Touch

Here is an uncomfortable tale.  An elderly woman was admitted from an aged care facility to the dementia unit due to ‘challenging’ (read: problematic) behaviors.  Specifically, the lady was agitated; intrusive (this usually means that the person goes into other residents rooms and touches their things, or tries frequently to enter the staff office); and was regularly seen masturbating in the public spaces.  Her dementia had progressed to the stage where she made unintelligible sounds and was unable to communicate via words.  She liked to approach staff and other residents, offering to shake hands, pulling her hand up out of her skirt waistband and underwear.  Many times a day she wore a lovely smile on her face, but this was occasionally replaced by distress and anxiety as she attempted to understand her environment.  No-one wanted to touch her. 

A second undesirable situation in dementia care units, occasionally reported by family and staff is that of, physical relationships between residents.  It is very distressing for long-term spouses to not be recognized by their partner with dementia.  More so, seeing your spouse sitting holding hands with a fellow resident. Yet these residents are generally calmer and happier within the care facility, after establishing these new relationships that generally involve some form of touch, like hand-holding and hugging.

My last story relates a less common dementia scenario, due to the fact that early onset dementia (in people under 65) occurs with much lower frequency than other dementias.  A 25year old woman is upset that her father wants her mother (aged 52) placed into an aged care facility so that he can pursue his new relationship with an old family friend.  Her father has been the primary caregiver for his wife for two years, having given up both his full-time job and most of his hobbies.  The husband indicates that he does not want to continue in this role.  He actively talks about his own need for love and support, no longer able from his wife due to her dementia.

Dementia robs individuals of comfort and security that comes from being touched, hugged, stroked and loved.  Often people with dementia are no longer able to initiate the physical connections that are expected by spouses and family members.  Often family members think that the lack of response from the person, means that they do not want to be touched.  And sometimes, it is the intact memory of a spouse and recollections of the past physical relationship with their now cognitively compromised partner, that reduces the desire to touch and hold the person.

Touch is a basic human need.  There are numerous research papers discussing the necessity of touch in developing the bond between mother and newborn child. The same need continues in adults.    Daniel Keltner's research found that touch is fundamental to human bonding, communication and health.  Further,  touch signifies trust, security and has the benefit of soothing the individual. How apt for people filled with anxiety caused by not being confident in their own life experiences and environment.  Touch is the  means to communicating love and support with someone who is no long able to follow and partake in a stimulating conversation. Touch tells them that they are still a valuable part of our lives.

                                                    “Touch has a memory" ― John Keats

Loss of Memory = Loss of Direction

Is it happy hour yet?  Can I have a scotch and soda?  Every afternoon during his 4week stay in the dementia unit, this gracious gentleman would stop at the nurses desk, believing it to be a hotel bar, and ask for a drink.  The nurses stood or sat behind a high counter that separated the staff from the patients and the public.  Hospital files and stationary, and not bottles of alcohol, were always visible - but the height of the bar, and the separation of the staff, were similar enough to confuse this gentleman into believing he was somewhere other than a hospital.

This same man managed to escape from the dementia unit, and found his way back to his apartment in the suburbs of Sydney.  He did this without a map, money, or a bus ticket.  The distance between the hospital and apartment was approximately 15kms, and it was assumed that he did travel by bus for some of this journey.  I had regularly witnessed this man getting lost while looking for the bathroom on the unit.  Successfully negotiating his escape and way home from the hospital is amazing, and for me, one of the mysteries of a mind befuddled by dementia.

Getting lost is common in people with dementia.  This symptom starts early and continues throughout the disease until it is constrained by a reduction in the individual’s mobility.  Disorientation to place occurs when the person with dementia is unable to correctly recognize familiar landmarks that have previously oriented them to where they are and where they are going.  

For the past thirty years architects, interior designers and dementia specialists have collaborated to design "dementia friendly" aged care facilities.  Most of the initial work sought to improve visual queues thereby orientating people to where they needed to go.  For example, making the doors of bathrooms obvious by contrasting the color of the door and placing a photo of a toilet on the door.  Similarly deterring entry to restricted areas by camouflaging doors to match the walls.   By controlling the environment via lighting, floor coverings, furnishings including photos, signs, images - we can enhance the independence of residents who are unable to regularly remember where the bathroom is, where their bedroom is, where the common social areas are.  

Finally, imagine finding yourself in a new city where you understand neither the language nor the culture.  How do you find a public bathroom?  You look for the clues and associations related to the location of public bathrooms inherently learned from you own life experiences.  Conventional toilet images on signs; buildings likely to have public access to bathrooms; queues of people obviously not shopping …  without being able to ask directly, you look for recognizable visual queues.  This is the same principle in helping people with dementia orientate to their surroundings:  make it simple, obvious and familiar.