Loss and Grief in Dementia

Recommendations

Info

Section 4 c. transitions encountered by family members of people with dementia The number and frequency of transitions into different healthcare settings varies for any individual and each change brings with it a need for new adjustments. These can cause periods of acute grief or ‘grief surges’ for family members. There are commonly reported ‘pinch points’ when grief is acutely felt. The figure below is taken from (156) and gives the reader a sense of the key points along the person and families journey with dementia where grief is heightened. key pinchpoints When Grief can be heightened for family members - Noticing symptoms - Diagnosis of dementia - Increasing loss of memory and cognitive functioning - Loss of driver’s license - No longer can go out alone - No longer can be left alone - Help with personal care required - Need for outside assistance - Need for respite - Incontinence - A change in the person's behaviour - Caregiver no longer recognised - Develops connection to another resident - Changes in the person's communication - Loss of mobility - Inability to swallow - Declining health and end-of-life care - Death and bereavement diagnosis need for support increases which may result in placement in a residential care centre Increase in home care support death Family members can experience intense feelings of guilt, particularly when there is a need for external involvement in the person’s care such as beginning to engage with home help services, going to respite or going into a nursing home. They can feel guilty if the person is unsettled, they can compare themselves to others and their ability to cope, they may find it very hard to see the person very settled in a new environment or having good relationships with healthcare staff when they had been very unsettled at home (157). It is vital to be sensitive to families at this highly emotional and stressful time. What may seem like an angry/ pedantic family member may in fact be a person trying to exert some level of control over a situation which is intensely stressful and overwhelming for them. Moving into a long term care setting is a time where family members experience acute or heightened grief reactions (141,158). Many family members can be overwhelmed with feelings of guilt, loss and grief. Healthcare staff and family members can often misinterpret each other’s communication, or each other’s motivations and this is a common source of complaint in healthcare settings (159). It is extremely important to support family carers to continue to be involved and connected with their relative and provide emotional support to help them positively adapt to their new situation (160). 50 Loss and Grief in Dementia
Guidance and Resources The figure below (adapted from (157)) demonstrates some of the thought processes which may be happening for family members and healthcare staff. HeALtHCARe StAff tHOuGHtS…. • They visit too often • They’re always having a go and asking questions • They exaggerate things which appear trivial • They are too demanding – feeling of being underappreciated / undervalued • I’m never going to be good enough so what’s the point fAmILIeS’ tHOuGHtS…. • Maybe I should have done more to try and keep him/her at home. • I miss my partner • I’m lonely • I wish I could do more • I used to make all the decisions and now I don’t know what’s going on • I’m really upset d. Supporting families through loss and grief “Good communication in the patient, relative and healthcare staff triad that addresses knowledge, emotional needs and practical planning may facilitate management of uncertainty and preparation for death” (161). As outlined in guidance area 4.1, one of your key roles as a healthcare staff member is to recognise, acknowledge and validate a family members’ grief reactions. Emotional experiences need emotional responses: think about where the person and their family are on their journey and what their priorities for care are at this point. Help should be designed to meet those needs – these may be physical, psychological, informational, spiritual or more general support. By engaging in open, respectful and positive interactions with family members and being mindful of the difficulties they are encountering in their current role(s), it is likely that you will support them to cope better and feel more positive about the difficult transitions they are facing. For the purposes of this document, the remainder of this section is divided into different points on a family's journey where they may need additional supports. These are: a) Supporting families when they are directly caring for their family member with dementia b) Supporting families when their relative enters their final days/weeks c) Supporting families at the time of a person with dementia’s death d) Supporting families after a person with dementia dies. Loss and Grief in Dementia 51
Page 1 and 2: PALLIATIVE CARE FOR THE PERSON WITH
Page 3 and 4: Contents Glossary of Terms 2 1. Bac
Page 5 and 6: Glossary of Terms Burnout: Is a com
Page 7 and 8: Background and Context • Better e
Page 9 and 10: Introduction Aim of this guidance d
Page 11 and 12: s Section 3 3 fOuR keY COnSIdeRAtIO
Page 13 and 14: Key Considerations Ambiguous losses
Page 15 and 16: Key Considerations ii. people respo
Page 17 and 18: Key Considerations 3.3 Recognise lo
Page 19 and 20: s Section 4 4 GuIdAnCe And ReSOuRCe
Page 21 and 22: Guidance and Resources b. Validate
Page 23 and 24: Guidance and Resources Where to see
Page 25 and 26: Guidance and Resources The grief re
Page 27 and 28: Guidance and Resources InfORmAtIOn
Page 29 and 30: Guidance and Resources Feelings whi
Page 31 and 32: Guidance and Resources 3. Are they
Page 33 and 34: Guidance and Resources teLLInG/ Rem
Page 35 and 36: Guidance and Resources 3 It is impo
Page 37 and 38: Guidance and Resources CASE STUDY 1
Page 43 and 44: Guidance and Resources e. exploring
Page 45 and 46: Guidance and Resources What gives m
Page 47 and 48: Guidance and Resources • The Iris
Page 49 and 50: Guidance and Resources InfORmAtIOn
Page 51: Guidance and Resources Early Stages
Page 55 and 56: Guidance and Resources b) Supportin
Page 57 and 58: Guidance and Resources AddItIOnAL R
Page 59 and 60: Guidance and Resources 4.4 GuIdAnCe
Page 61 and 62: Guidance and Resources Develop awar
Page 63 and 64: Guidance and Resources tIpS fOR ORG
Page 65 and 66: s Section 5 5 AddItIOnAL ReSOuRCeS
Page 67 and 68: Additional Resources 5.2 understand
Page 69 and 70: Additional Resources progression of
Page 71 and 72: Additional Resources ? ?
Page 73 and 74: 71 Loss and Grief in Dementia Addit
Page 75 and 76: Additional Resources ? ? ? ? ?
Page 77 and 78: Appendices membership of the expert
Page 79 and 80: Appendices Literature Review: DEMEN
Page 81 and 82: Appendices Themes: All sourced mate
Page 83 and 84: Appendices AppendIx 4: COntACt detA
Page 85 and 86: Appendices 25. Steinberg L, Howes J
Page 87 and 88: References 79. Dodd P, Guerin S. Gr
Page 89 and 90: References 134. Moniz-Cook E, Verno
Page 92: The Irish Hospice Foundation Morris

Loss and Grief in Dementia

Create successful ePaper yourself

Delete template?

Save as template?