Family Involvement and Dementia Sycamore Village Assisted Living hosts free monthly seminars for the community. "Family Involvement and Dementia" was presented at the December 2011 seminar, by Natalie McFarland, RN, BSN and Dementia Care Educator. Topics include: 
- How to build family partnerships
 - How to offer opportunities for family involvement with care of
the loved one with Alzheimer’s 
- Learning how to interact effectively with family members. For more information, contact us: 618-222-2571 www.SycamoreVillage.net

2. Natalie McFarland, RN, BSN
Dementia Care Educator
Natalie has supervised the Alzheimer’s and Dementia related programming at
Sycamore Village since 2004. She is a registered nurse and Sycamore’s on-site
dementia care expert.
Natalie is “train-the-trainer” certified
through the Alzheimer’s Association
and The Best Friend’s
Approach, providing continuous
Alzheimer’s education to staff and
families.
Natalie has presented at both the Illinois
and Missouri Pioneer Coalition State
Conferences, local Chamber of Commerce, hospitals, several healthcare
facilities, and to the local community.
Natalie is featured quarterly on the Norm Greenberg Show through the local
Charter Cable Network discussing a variety of dementia-related topics.

3. Mission
• To be our community’s resource for
dementia care, research and education
•To provide comfort, care, love and education
to both our residents and their families living
with dementia
• To reach out beyond our walls and support
healthcare providers, caregivers, family
members and others in the greater
community challenged by this degenerative
disease through prevention, education, early
detection and research initiatives
• To return the love to those we are privileged
to serve by fostering friendships and
acknowledging their live stories

4. Dementia Overview
a broad term for any brain
disorder that causes
confusion, memory
loss, personality
changes, and mental
decline

5. Dementia Overview
Alzheimer’s Disease is a brain disorder
named for German physician Alois
Alzheimer, who first described it in 1906.
He presented the case of
“Auguste”, a 51 year old woman.

6. Alzheimer’s Overview
• Is a progressive and fatal
brain disease
• Causes plaques and tangles
in the brain that destroys
brain cells
• Is the most common form
of dementia
• Has no cure

7. Family Experience
• 1 out of every 3 families in
the United States is
affected by AD in some
way.
• What are some challenges
families may face when
they are caring for their
loved one with dementia?
• Physical, Emotional, Legal

8. Family Experience
• Physical – loss of sleep, fatigue, no time for one’s
self, increased risk for injury and illness
• Emotional – denial, helplessness, anger and
resentment, frustration, family conflict, fear, inadequacy
and
guilt, hopelessness, depression, sadness, loneliness, isol
ation
• Legal – complicated decisions, planning of assets, ethical
questions, feelings of uncertainty about decisions
made, worry, self-doubt

9. Family Dynamics
• Families will experience
similar feeling as they start
new services or admit their
loved ones into long-term
care facilities.
• What are some possible
barriers for family
members to accepting
help? Emotional?
Financial?

10. Family Barriers
• Financial – high out-of-pocket
costs, insurance
decisions, impact on family
members
• Emotional –
doubt, frustration, loss of
control, helplessness, stress, fe
ar of – how can a stranger know what is best for my mom?
Doubt
Frustration – guilt, unrealistic expectations
unknown,caused bygrief, denial, fati of care
Fear of unknown – lack of trust,
gue – loved one may be resistant to starting care,
Stress
Guilt –“What if mom wakes up, has a lucid moment, and realizes she is in a nursing home?
Grief – by accepting services some may realize the PWD will not get better,
Denial – family member may expect outside services to “heal” their loved one,
Fatigue – families may over-commit “Now that mom is in a nursing home, I have to check
on her every day to make sure they are treating her right”
Financial – impact on families (estate planning, conflicts about how to spend money)

11. Family Expectations
Imagine moving a loved one into a nursing home for the first time. What
would some of your expectations be from the facility providing their care?
• Physical?
• Physical needs
met, exercise, prevention of skin
breakdown and
falls, safety, comfort, cleanliness,
grooming, nutrition, access to
medical staff
• Emotional?
• Hugs, attention, involvement with
others, acknowledgement, respec
t, connection with life story

12. Building Family Partnerships
Staff Considerations
• Staff is friendly and caring
• First priority is the PWD (Person
with Dementia) – families will see
this when they catch staff caring
The goal is for family members • Recognize and address family
to begin to perceive staff as members by name
extended family so that they are • Get to know the PWD’s life story
more trusting and willing to join • Staff is willing to answer
staff in realistic expectations of questions, provide information, and
care and outcomes. Families expertise
will know staff is caring when
• Should offer unrushed time to talk
they “catch” staff in the act of
caring. Knowing their life story • Staff members can be assigned to
shows that they care about the family members
person’s • Should be able to demonstrate
routines, interests, likes/dislikes. dementia care skills in front of
families

13. Building Family Partnerships
• Staff can provide
updates to families
• Communicate twice a week
• Notify family of unexpected
change in condition promptly
and matter-of-factly
• Staff should be aware of
family’s highest priority
concerns upon admission so
they can address them

14. Building Family Partnerships
Staff should offer opportunities for involvement.
• Staff should not be afraid to acknowledge difficulty with
issues and ask family for advice
• Staff should encourage families to communicate with each
other and promote friendships
• Encourage family counsel and support groups
• Introduce families to each other with common interests or
obstacles
• Families may need some visiting ideas when their loved
one is having a difficult time transitioning to their new home

15. Building Family Partnerships
• How do you actively listen
to a family member?
• Really listen
• Remind them that they are doing the
best they can
• Do not take it personally of the family
member gets angry or upset
• Do not judge
• Staff can reassure families that
sadness, worry, guilt, and helplessness
are all normal expected emotions
• Hold longer conversations in a
relaxed, private area, not just in
hallways

16. Building Family Partnerships
• Avoid taking sides
• Be supportive, yet non-judgmental
• Know that every person and every
family has a long history
• Adult children and spouses may
have unique issues
• Maintain professionalism

17. Rewards of Involvement for both Staff & Families
• Feeling of loyalty
• Knowing they are not alone
• Empowered to help others
• Behaviors/moods of PWD is
positively affected by
integrated approach of staff
and family
• Staff becomes extended
family and job seems like
less of a job and more of a
privilege
• Trust

18. Example
• A daughter of a • Poor response: “I
resident complains to know! I can’t believe
Lulu, a staff person at that your brother won’t
the Happy Hearts do more for his own
nursing home, that her mother.”
family is just no good. • Better response: “I’m
“I’m the only one who sorry. I know things
cares.” can get overwhelming.
Have you ever thought
about attending a
support group?”

19. Example
• Mrs. Smith’s 87 y.o. mother has
been living in your dementia care
• Good responses:
unit for several months. She is able Asking the daughter to
to engage in simple
conversations, but has difficulty
observe her mother
completing complex tasks. She enjoying other
responds well to staff and attends a
variety of activities. Each time her activities.
daughter Betty visits, she insists
that the staff is not doing enough for
• Adapting another card
her mother. She is convinced that game to suit the
her mother would enjoy playing
bridge. She is not satisfied with the mother’s interest, if
other activities her mother seems to she is interested.
enjoy and demands that the staff
learn to play bridge with her.

20. Example
• A woman converted late in life to
a religion that disapproves of
dancing, and now she wants to
dance at the day center. Her
adult children (not of that
religion) say yes. The husband
asks the staff not to let her
dance. How do you responds?
• The decision was made to not
encourage her to dance
(respecting her last known
religious beliefs), but not to stop
her if she wished to dance.

21. Example
• For Delilah, the Demanding
Daughter, whatever staff does never
seems to be good enough. She
seems to complain to staff, even
when nothing is wrong. Her
constant criticism is demoralizing for
staff. How could you respond?
• Often, families express grief through
complaints. Be supportive and
recommend resources. Support
group; Alzheimer’s Association
support line; Ambiguous Loss:
Learning to Live with unresolved
grief; try not to take complaints or
statements personally.

22. Summary
• Family caregivers need a
best friend too
• Be supportive and maintain
professionalism
• Create a partnership and
remember the goal is to give
the best care to the PWD
• Sometimes your best efforts
may not work. Perhaps
family caregivers would
benefit from another point of
view such as a support group
or counselor.

23. References
Alzheimer’s Association
www.alz.org/stl/
Best Friend’s Approach to Dementia Care
www.bestfriendsapproach.com/

24. Contact Us
www.sycamorevillage.net
www.facebook.com/sycamorevillage
www.youtube.com/sycamorevillage
www.flickr.com/sycamorevillage
www.twitter.com/sycamorevillage
Phone: 618-222-2571
Email: nmcfarland@sycamorevillage.net