LeadingAge New York Adviser Winter Vol. 1 | Page 51

residential care facility and is covered by Medicare as long as the
patient’s physician attests that the patient is terminal.
Even in the last stages, patients with Alzheimer’s disease
communicate discomfort and pain. Pain and suffering cannot
be totally eliminated, but the hospice team can help make the
patient comfortable.
Managing pain and discomfort for a patient with late-stage
Alzheimer’s disease requires careful monitoring and reassessment
of subtle nonverbal signals. Slight behavioral changes can signal
unmet needs. The hospice team, from the physicians to the
volunteers, are experts in recognizing symptoms of distress and
experiences in both pharmacological and non-pharmacological
interventions to manage pain. The soothing properties of touch,
massage, music, fragrance, and a loving voice can help ease
distress. Hospice team members can utilize a variety of techniques,
traditional and non-traditional to keep the patient comfortable.
The impending death of a family member is an emotional time for
everyone and hospice professionals are there to provide support
for the family during the very last stages of the disease. They
also provide bereavement support for up to 13 months after the
patient’s death. This is because the families may find that they need
bereavement support up to and through the one year anniversary of
their loved one’s death.
Bereavement counselors can make recommendations of various
local support systems throughout the community, a resource
that caregivers may not realize is available to them. Whether
it is through direct conversations, support groups or various
remembrance ceremonies, hospice professionals can help caregivers
connect with the support system that’s right for them.
Caregiving for a friend or relative with dementia can be
overwhelming. Memories of how a loved one used to be and the
stress of the current demands placed on the caregiver may make
the caregiver feel sad, angry or guilty. Caregiving can be socially
isolating as well as mentally and emotionally stressful. People often
feel intensely uncomfortable talking about death and dying and this
is further intensified if the loved one is suffering from Alzheimer’s.
The anxiety this causes may mean that the caregiver is avoided further increasing the feeling of isolation. Well-meaning friends
and acquaintances may also avoid conversation about the patient
to “protect” their friend from further pain, or may inadvertently say
insensitive things.

Ironically, the extended journey of a disease such as
Alzheimer’s gives families the gift of preparing for,
and finding meaning in, their loved one’s end of life.
When death is slow and gradual, many caregivers are
able to prepare for its intangible aspects and support
their loved one through the unknown. Even with
years of disease progression, others find themselves
unprepared and surprised when death is imminent.
Talking with family and friends, consulting hospice
services, bereavement experts and spiritual advisors
can help caregivers work through these feelings and
focus on the loved one. Hospice and palliative care
specialists and trained volunteers are able to assist
not only the dying person, but also caregivers and
family members.
Caring for a loved one with Alzheimer’s disease
is a long and difficult road. Even with years of
experience, caregivers often find the last stages
of life uniquely challenging. A hospice team can
provide medical, emotional and spiritual support
according to the wishes and beliefs of the patient.
They also offer emotional support to the patient’s
family, caregivers and loved ones, including grief
counseling. Let hospice help ease the journey from
care and grief towards acceptance and healing.

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