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Tips to living better with dementia in your family

By 28 December, 2016 No Comments

As someone who has not only studied the group of diagnosis’ for dementia but also one who experiences the effects on a day to day basis in my personal life, I thought it time to produce a Vivir orange paper to share not only part of my story but also provide some hints on how to better manage living with those with dementia.

Having studied physiology, followed by neuroscience, the body and the brain have always been my passion. Any ailment or disease affecting the brain, a primary area of interest. The day to day effects I experience are from my mother–in–law who is 5 years into her post-Alzheimer’s diagnosis’ life and my father, who recently passed away from brain cancer, which symptomatically appeared similar to Alzheimer’s toward the end.

The dementia diagnosis

A dementia’ diagnosis of a family member can often be devastating. Families and friends envisage that they will bear witness to their loved one becoming less themselves, needier, less capable and ultimately pass away prematurely from the collection of symptoms. Dementia is an overall term that describes a wide range of symptoms associated with a decline in memory or other thinking skills, severe enough to reduce a person’s ability to perform everyday activities’ (Kennedy et al., 2010).

A common error made by many family members or friends is post diagnosis, treating their loved one as someone with a disability. They do too much for them and eventually take control of all aspects of their lives. This dramatically disables the individual who, in the majority of cases, is trying to live as independently as possible and manage as many daily tasks by themselves as they can. The diagnosis is one thing, the greater challenge is the reaction and subsequent behaviour alterations of those around.

Living positively with dementia

4 key ways in which we can have a positive impact on their function and capacity:

  1. empowering those with dementia to continue to attempt day to day tasks,
  2. initiating situations for social interaction,
  3. encouraging exercise and
  4. creating a safe environment.

I often ask myself, what can we do differently’, how can we help her to be more independent’, what works vs what doesn’t work’? An overriding positive behaviour I see in my family is the dominance of social interaction. We take every possible opportunity to have social events in a safe’ environment (e.g. at home and in familiar environments) which assists in flooding each and every person’s brain with all of the lovely chemicals and hormones that aid us in feeling happier, thinking clearer and sleeping better. It may sound a little extreme but social interaction has been proven to release endorphins (feel good hormones), oxytocin (bonding hormone) and serotonin (at night this turns into melatonin which helps us sleep).

The dementia brain is particularly receptive to the positive flow of chemicals and hormones. On the flip side, it is also very vulnerable to the impact of noradrenalin, adrenalin, increased heart rate, blood sugar level spikes and increased blood pressure; the resulting physiological response to fear. This is due to the fact that the pre frontal cortex, which involves higher level thinking, is generally one of the first regions to suffer diminished capacity. Brain function is more reactive than proactive or anticipatory, which means it is relying on primitive cues (e.g. fight flight response) to respond to situations.

As one area of mental hardware deteriorates, another is recruited to take its place. When the brain breaks down’, a pathway is developed around it (known as scaffold) which distributes cognitive processes to frontal and other areas (including both hemispheres) and to new neurons (Kolata G. 2010).

The Scaffolding Theory of Aging and Cognition adds the notion that the brain’s software may be enhanced at the same time that the circuitry is being upgraded. The scaffold is enhanced by learning, physical exercise, cognitive stimulation, and social engagement.

Dementia and sleep

Dementia can play havoc with sleep, yet good sleep is so important for people with dementia to improve daytime function. Up to half the people with dementia will have a sleep pattern that is not normal’ (Sleep Health Foundation, 2011). Often they will feel sleepy during the day and have a less deep, restful sleep.

                Figure 1. Normal sleep pattern                               Figure 2. Sleep with dementia

Figure 1_normal sleep pattern       Figure 2_sleep with dementia

Deep sleep (Stage 4) provides physical recovery and the REM zone provides mental recovery. As Figure 2 demonstrates sleep quality can be reduced as a result of a number of factors relating to the dementia or medication used to treat symptoms of dementia. This can lead to increased tension, poor coordination as well as mood problems including depression.

What can we do

  • Create a sleep and wake pattern and a night routine that aids falling to sleep. A shower 20 minutes before bed can assist with increasing the sleep wave that naturally occurs at night.
  • A clock that denotes whether it is day or night can help a person with dementia to know whether it is time to wake up or time to sleep.
  • Encourage activity throughout the day and only nap during the circadian dip, between 1-3pm.

Keeping your dementia family member safe

Finally, some simple building alterations can also create a safer environment for those with dementia. A few suggestions provided by Alzheimer’s Australia are:

  • Remove clutter and rugs that could be tripped over and tables and chairs that may be in the way.
  • Ensure clear colour contrasts between the wall, the light switch box, and the switch itself, so that it can be identified without difficulty as well as between the door and the door frame so that the person with dementia can locate the exits easily.
  • Consider a plug-in motion sensor light to illuminate the way to the bathroom at night.
  • Remove doors from wardrobes so that clothes can be seen easily. A dementia-specific wardrobe reduces confusion by minimising choice. For example, the next day’s outfit can be hung on an open shelf ready to be worn the next morning. The rest of the garments can be stored away from sight until they need to be used again.
  • Some people with dementia may not recognise their reflection in a mirror and think a stranger is in the room. Consider removing or covering mirrors if this becomes a problem.
  • Remove clutter but maintain familiarity in the environment through the inclusion of photographs and objects that are important to the person.

Take home messages

A dementia diagnosis can bring with it a raft of emotions, and generally more so for the carers. The uncertainty that comes with a diagnosis can be paralysing and for most the difficulty comes from not being able to control the progressing symptoms or having assurance in even what the progression will be. It is difficult and worrying, but there is a lot we can do to help ourselves and our loved one to better manage life with Dementia. The take home messages are:

  • To enable, we must allow
  • Maintaining social interaction is key
  • Develop good sleep habits/routine
  • Look to make building alterations where appropriate
  • Diet and exercise aid neurological function
  • Keep discussions simple
  • Don’t require high-level thinking of the tired’ brain

Author Lee Polychronopoulos

Vivir Healthcare

References:
  1. Kennedy GJ. Proposed revisions for the diagnostic categories of dementia in the DSM-5. Primary Psychiatry. 2010;17(5):26-28.
  1. Kolata G. In Alzheimer’s research, hope for prevention. The New York Times. August 5, 2010: A18.
  2. Dementia and Sleep. The Sleep Health Foundation. Available at: www.sleephealthfoundation.org.au/dementia and sleep.pdf Accessed November 30, 2016
  3. Insel T, Cuthbert B, Garvey M, et al. Research domain criteria (RDoC): toward a new classification framework for research on mental disorders. Am J Psychiatry. 2010;167(7):748-751.
  4. NIMH Research Domain Criteria (RDoC). Available at: www.nimh.nih.gov/research-funding/nimh-research-domain-criteria-rdoc.shtml. Accessed December 1, 2016.