Page 45 - Jo Dee C Jacob Girl Scouts CEO

Dementia and End of Life Care

Article courtesy of LightBridge Hospice & Palliative Care
As our population ages and baby boomers reach 65, an increasing
number of families will be affected by loved ones with dementia.
Dementia is the 6th leading cause of death in the United States.
One in eight Americans over the age of 65, or more than 5.3 mil-
lion people, have dementia. African Americans are at four time’s
greater risk of developing dementia and Hispanics are two times
greater risk.
Dementia is not a specific disease. It's an all-encompassing term
that describes a wide range of symptoms associated with a decline
in memory or other thinking skills severe enough to reduce a per-
son's ability to perform everyday activities: Alzheimer's accounts
for approximately seventy percent of cases of dementia. Vascular
dementia, which occurs after a stroke, is the second most common
dementia type. In addition, there are many other forms of demen-
tia and related conditions that can cause symptoms of dementia.
Dementia is caused by damage to brain cells. While symptoms
can vary greatly, at least two of the following mental functions must It is not uncommon for people with dementia to get agitated or
be significantly impaired to be considered true dementia: Memory, frustrated. When dealing with someone’s agitation it is important to
communication and language, ability to focus and pay attention, go to their reality and calmly ask where, what, when and how type
reasoning and judgment, and visual perception. People with de- questions to redirect and calm them down. For example, Cindy
mentia may have problems with short-term memory; keeping track shared that one of Lightbridge’s hospice patients was convinced
of a purse or wallet, paying bills, planning and preparing meals, she had hair loss. The Lightbridge staff and the patient’s family
remembering appointments or traveling outside of their familiar were encouraged to ask: “When did you first start noticing this”, or
neighborhood. Many dementias are progressive, meaning symp- “where does the loss seem the worse” or “what do you think might
toms start out gradually, or more suddenly (as sometime occurs make it better? How about if we try to style your hair this way?”
following general anesthesia) get worse. instead of arguing with the patient that she had no hair loss. “It is
While the challenges of dementia can be heartbreaking, a peaceful, important to live their truth, identify their feelings and show empa-
meaningful existence is possible even if a loved one has advanced thy and respect. Allow for negative feelings to be expressed then
dementia or Alzheimer’s disease. Dementia is a disease that is life redirect and guide the conversation to more positive ones” said
limiting and one that is terminal although some people will die of Cindy.
other illnesses. LightBridge Hospice recognized the unique needs Cindy also shared “restlessness of a loved one with dementia will
of this population and developed a special dementia program. This often exhaust the caregiver.” It is helpful to provide a dementia San Diego
program involves training for all of their staff to become dementia individual with items that promote self-soothing. A body pillow with Woman
specialists, who are then able to provide the best care possible for the cologne or scent of their spouse can bring comfort. Rock-
hospice patients with dementia. ing chairs and gliders have also been found to relieve stress, and
“When we begin providing care to a patient who has dementia birdfeeders can be a nice distraction. Setting up an area where a
we explore who the patient was before their illness. What is their loved one can engage in a repetitive activity can help. Some things 45
personality, their likes and interests? What are their values beliefs that have worked well include a table for folding laundry (don’t
and culture? This assessment allows us to create a personalized be surprised if your loved one does this over and over again), or
plan to bring peace and the most comfort possible to a patient and pictures to look at or recipes to sort.
family,” says Jill Mendlen, RN President/CEO and Founder of Light- It is very common for someone with advancing dementia or Al-
Bridge Hospice & Palliative Care. “Our staff finds special ways to zheimer’s to have outside hired caregivers. Some families decide
connect with a patient, engaging their senses through sound, color, to move their loved one to a facility: When a patient is on hospice,
scent and touch. We share this connection plan with their loved LightBridge staff works with the family, caregivers and/or the facil-
ones and caregivers.” ity staff to create a plan of care that is customized to the person’s
Cindy Hutchinson, RN, Vice President of Clinical Services at Light- needs and stage of disease. LightBridge staff can help train
Bridge explains, “A person with dementia has generally lost the individuals who may not have a lot of experience in working with
last 20 to 60 years of their life and is living in another time in their persons with advancing stages of dementia.
mind. It is helpful to ask the person with dementia how old they Cindy stated “It is important for caregivers to be calm when they are
are so you know how to respond and make them feel comfortable. with your loved one. Observe the caregiver or facility staff. Do they
If the response is ‘forty years old’ and the person is actually eighty, talk slowly with a low pitch (if it is too high pitched it’s more difficult
you can better understand if they don’t recognize their adult chil- to comprehend). Are they present and kind when interacting? When
dren because in their mind they are still youngsters. Perhaps the asking something do they have your loved one’s attention? Do they
dementia patient may ask for their mom, thinking she is still alive. ask one question at a time and wait for them to process the ques-
Our goal is to provide reassurance and comfort, so we don’t want tion and answer? How do they respond when your loved one can’t
to say, “Don’t you remember? Your mom died years ago.” This remember a word or noun? Do they give short, simple and concrete
response actually makes them relive that sad time. This is why we information and break down tasks into steps?” Each of these is
explore who they were before their illness. If they grew up on a important in communicating with a person with dementia.
farm we might respond “mom is out on the land”, or you could try Moving a loved one with dementia into your home or a facility can
asking questions that required only yes or no answers. “Did your be traumatic. “When a person with dementia is moved into a new
mom use to go in to town to shop?” “Did she have animals on the environment, try to make the room look, feel and smell like them. A
farm?” “Did your Mom feed the animals?” This promotes commu- common mistake is buying new decorations and furniture; the result
nication and provides the family/caregiver an opportunity to provide is that little is familiar to them so they often will repeatedly request
to go home. An evaluation of their living space prior to their move is
comforting reassurance.
important to identify areas were the person felt most comfortable.