12/2/2019 Addressing The Spiritual Needs of Persons with Dementia NACC Webinar Session 3, Dec. 3, 2019 Dr. Debbie Armenta, MAPT , MDiv, DMin, BCC candidate 1 Recap of week 2 Communication adaptations for • persons living with dementia. Discussed Improv and Dementia • care for communication skills. Looked at some challenges in the • individual visit. Addressed non-verbal behaviors • and cues. Looked at worship services in the • communities of persons living with dementia. Reviewed some of the family • dynamics. 2 Session 3 Objectives / Learning out comes At the conclusion of Session II participants will be able to: Identify Strategies and Resources for implementation of Spiritual Care in particular environments for persons with dementia. Identify additional resources for ongoing education and formation of those responsible for spiritual care for persons living with dementia. Additional resources. 3 1
12/2/2019 “Singapore's first National Survey on Dementia found that persons with dementia and their caregivers experience rejection, loneliness, shame, and feel less competent.” https://qswownews.com/3-in-4-persons-with-dementia-feel-ashamed-and-rejected-singapores-first-national-survey-on-dementia-finds/ 4 This study reveals: “This survey revealed that nearly 3 in 4 persons with dementia feel rejection and loneliness, and more than 1 in 2 feels that others act as though they are less competent due to their condition.” “Nearly 30% of caregivers feel embarrassed while caring for their loved ones with dementia in public and more than 1 in 10 feels that others around them seem awkward.” https://qswownews.com/3-in-4-persons-with-dementia-feel-ashamed-and-rejected-singapores-first-national-survey-on-dementia-finds/ 5 These statistics are significant and concretize the needs of providing spiritual care for the person living with dementia AND the caregiver. 6 2
12/2/2019 Loneliness, Dementia, and the need for relationships and human connection Christine Bryden documents her life as she lives through the changes of her Alzheimer's. She writes of a friend in her “Tea Group” tells her: “…I went to visit Helen who stayed at home while her husband was at work. Helen said she often felt lost, even in her own home. It was not really a matter of losing her way, but losing herself somehow she said. She knew the house was there all around her and she could look down and see her body there, but somehow in her head, there was no sense of being a person existing in this space. Helen said it was worse when she was by herself, but when her husband or caregiver, or friends were there relating to her she seemed to come back from where she had been lost… Maybe they acted like a mirror for her, reflecting her existence, reaffirming her personhood. “ Dancing with Dementia, p. 43 7 Pastoral Spiritual Care Early Stage • May still attend services • Prayer, ritual, song usually viable options. • Encounter and engagement with others If it is a one to one visit – Ministry of Care or a non denominational chaplaincy visit – engage with the person, concrete open ended questions. Know the faith history. Use ritual as appropriate. 8 Pastoral Care Visit or Service Mid Stage Describes as feeling abandoned • Increasing isolation and disconnect • May become less tense and more relaxed and • content. • May become more agitated Ritual, Prayer, Touch, eye contact • 9 3
12/2/2019 Pastoral Care Visit or Service Later Stages Increased sleeping � Less ability to connect � Eye contact and close proximity � � If offering communion in a service – know who can receive or who can not. � Know who can swallow and who can not. � When handing out communion and not providing communion to someone – hold their hand or bless their head with the sing of the cross. Never pass over them. � Song increasingly important. � Ritual prayer still very effective. 10 Is God Forgotten? https://www.youtube.com/watch?v=UqRJOThKJPY - action=share 11 Group Visits and/ or Group Services 12 4
12/2/2019 What does a worship service look like? Environment: Materials: � Large space? (do you need a � Is there a table I can small speaker and mic?) provide a small sacred setting or objects? � Designated Space? � Can I bring in music (blue Lots of distractions? � tooth and IPad. � Fairly Self Contained? � Is there a TV I can select � How is the furniture Music on to project large arranged? images? � How do the residents arrive? � Large battery operated Is transportation needed? � candles. 13 Educating Ministers and Volunteers Bringing in ministers help them to understand When those in your care: 1. Have orientation on dementia and best communication skills. 2. Provide them with resources and cue cards. 3. Help them to know your residents. 4. Mentor them for best practices for your community members that live with dementia. 14 How to provide for care in the Parish or Church Community? � First and foremost the parish or church needs to know there are needs in the community. And then begin to offer resources to address them. � Find your parish or church ally! (Pastor, Deacon, another minister?) � What are some obstacles to providing for the needs in a church community? FEAR, lack of knowledge, lack of understanding, lack of resources, over committed staff…. 15 5
12/2/2019 Hope 16 Finding the Hope Dr. Benjamin Mast, licensed clinical psychologist and elder at Sojourn Com munity Church states: In his interview Alzheimer's the Brain and the Soul states: Some people continue to cling to the faith and engage in their practices of faith….But other people have different experiences and their walk is much more difficult for them…” www.desiringgod.org 17 Hope Resources Using the power of Hope to cope with Dying… The Four Stages of Hope By Dr. Reed-Nash 18 6
12/2/2019 Hope in Scripture � Mast uses the scripture from Dt. 7 to remind us of the hope in the midst of fear. � The reality of the Israelites they are immersed in overwhelming fear in the face of their enemies that God instructs them to overcome… � They state: “These nations are stronger than we are… how can we drive them out? (Dt. 7:17.) � God reaffirms what we know of our loving and merciful God: “Do not be terrified by them … for the Lord your God is among you…(Dt. 7:21). 19 Dr. Carol Reed-Nash tell us the four stages of Hope that a person experiences when they are aware they are dying are the following: 1. Hope for a cure- I am going to beat this thing. 2. Hope for Treatment – I hope I am in the percentage this clinical trial heals… 3. Hope for Prolongation of Life: I hope to be at my granddaughter’s wedding…. 4. Hope for a Peaceful Death…I hope I die pain free…. (p.23.) 20 Living this Hope as Pastoral Caregivers and Chaplains: � Being present � Listening and learning to hear what the dying fear in their death. What the person living with dementia fears in the death. � What are the three main fears and how do we offer hope to our community members with dementia and their families? � Fear of the process ? � Fear of the moment of death ? � Fear of the hear after? (p.11,12) 21 7
12/2/2019 Four levels of pain � First: Physical pain � Second: emotional pain, � Third: and perhaps the most excruciating, the pain of mental anguish � And last: the pain of spiritual alienation. 22 Providing Spiritual Care for persons with dementia includes: � “If we truly listen carefully to a persons words and actions. we hear and see what they most fear.” � Listening and hearing what the dying fear most in death enables us to help them achieve the peaceful death they are hoping for…(p.14) � Animating the Power of Hope for persons suffering through a diagnosis, or a family suffering with the changes of a loved one… 23 24 8
12/2/2019 The KEY to providing authentic spiritual care to persons journeying with dementia is this…. It is critical that you believe that what you do can and does make a difference. Even if our loved ones with dementia don ’ t remember… you must believe in what you do and in what you bring to the person that God has placed in front of you…and then in humility be open to learning from them and receiving. 25 Questions / Comments 26 9
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