family involvement and dementia

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Family Involvement and Dementia

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Family Involvement and DementiaSycamore 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:618-222-2571www.SycamoreVillage.net

TRANSCRIPT

Page 1: Family Involvement and Dementia

Family Involvementand Dementia

Page 2: Family Involvement and Dementia

Natalie McFarland, RN, BSNDementia 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.

Page 3: Family Involvement and Dementia

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

Page 4: Family Involvement and Dementia

Dementia Overview

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

Page 5: Family Involvement and Dementia

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.

Page 6: Family Involvement and Dementia

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

Page 7: Family Involvement and Dementia

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

Page 8: Family Involvement and Dementia

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, isolation

• Legal – complicated decisions, planning of assets, ethical questions, feelings of uncertainty about decisions made, worry, self-doubt

Page 9: Family Involvement and Dementia

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?

Page 10: Family Involvement and Dementia

Family Barriers• Financial – high out-of-pocket

costs, insurance decisions, impact on family members

• Emotional – doubt, frustration, loss of control, helplessness, stress, fear of unknown, guilt, grief, denial, fatigueDoubt – how can a stranger know what is best for my mom?Frustration – caused by unrealistic expectations of care Fear of unknown – lack of trust, Stress – loved one may be resistant to starting care, 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)

Page 11: Family Involvement and Dementia

Family Expectations

• 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, respect, connection with life story

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?

Page 12: Family Involvement and Dementia

Building Family PartnershipsStaff Considerations• Staff is friendly and caring

• First priority is the PWD (Person with Dementia) – families will see this when they catch staff caring

• Recognize and address family members by name

• Get to know the PWD’s life story• Staff is willing to answer questions,

provide information, and expertise• Should offer unrushed time to talk • Staff members can be assigned

to family members• Should be able to demonstrate

dementia care skills in front of families

The goal is for family members to begin to perceive staff as extended family so that they are more trusting and willing to join staff in realistic expectations of care and outcomes. Families will know staff is caring when they “catch” staff in the act of caring. Knowing their life story shows that they care about the person’s routines, interests, likes/dislikes.

Page 13: Family Involvement and Dementia

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

Page 14: Family Involvement and Dementia

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

Page 15: Family Involvement and Dementia

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

Page 16: Family Involvement and Dementia

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

Page 17: Family Involvement and Dementia

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

Page 18: Family Involvement and Dementia

Example

• A daughter of a resident complains to Lulu, a staff person at the Happy Hearts nursing home, that her family is just no good. “I’m the only one who cares.”

• Poor response: “I know! I can’t believe that your brother won’t do more for his own mother.”

• Better response: “I’m sorry. I know things can get overwhelming. Have you ever thought about attending a support group?”

Page 19: Family Involvement and Dementia

Example • Mrs. Smith’s 87 y.o. mother has

been living in your dementia care unit for several months. She is able to engage in simple conversations, but has difficulty completing complex tasks. She responds well to staff and attends a variety of activities. Each time her daughter Betty visits, she insists that the staff is not doing enough for her mother. She is convinced that her mother would enjoy playing bridge. She is not satisfied with the other activities her mother seems to enjoy and demands that the staff learn to play bridge with her.

• Good responses: Asking the daughter to observe her mother enjoying other activities.

• Adapting another card game to suit the mother’s interest, if she is interested.

Page 20: Family Involvement and Dementia

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.

Page 21: Family Involvement and Dementia

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.

Page 22: Family Involvement and Dementia

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.

Page 23: Family Involvement and Dementia

References

Alzheimer’s Associationwww.alz.org/stl/

Best Friend’s Approach to Dementia Carewww.bestfriendsapproach.com/

Page 24: Family Involvement and Dementia

Contact Us

www.sycamorevillage.netwww.facebook.com/sycamorevillagewww.youtube.com/sycamorevillagewww.flickr.com/sycamorevillagewww.twitter.com/sycamorevillage

Phone: 618-222-2571Email: [email protected]