Case Study - Bo - Dementia
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Bereavement Case Study - Bo

Lee (54 years) lives with her husband and her 3 teenage children. Recently, her father Bo (81 years) moved into their home. Bo was diagnosed with dementia a few years ago.

Lee’s mother, Wendy, was caring for Bo before he moved with Lee and her family. Wendy died of pancreatic cancer 4 months ago (at 73 years). Lee tells you that her mum was her ‘rock,’ and that she has always had a stronger relationship with her mum than with her dad. Wendy provided a lot of practical help for Lee when her children were younger. Wendy and Lee spoke on the phone every day.

Bo receives the Support at Home Program for assistance with personal care. He has problems with memory, concentration and planning tasks. Lately, there are occasions where he has not recognised family members or friends. At times, he follows Lee around the house, asking for Wendy.

Lee says this behaviour is usually worse later in the afternoon, when she is trying to help her kids with homework and prepare dinner. Lee says she had no idea how hard it would be to care for Bo. She says it feels like her dad is ‘here but not here’. She feels angry and resentful that she now has to care for her dad. At the same time, she also feels very guilty and worries she dishonours her mum with these feelings. Lee is anxious about leaving Bo at home and so has stopped seeing friends during the week. Lee was very active before caring for her dad, and often used to run in the evenings. However, even when her husband is home and she is able to leave the home, she says she no longer finds running or seeing friends enjoyable.

This ELDAC case study links to the bereavement section of the ELDAC Dementia Toolkit, which is one of the elements in the ELDAC care model. As you work through the case study you might find other elements within the ELDAC care model useful to review. This case study can be used to demonstrate how to:

  • support a person living with dementia who is experiencing loss, grief and bereavement
  • offer family and carers support in their own grief while they are also caring for a person living with dementia.

The case study can also can be utilised as part of a group discussion or exercise within education or professional development sessions.

  • You know that Bo and Lee are dealing with many different losses. These include:
    • Wendy’s death - the loss of a wife and mother.
    • Bo’s progressing illness and leaving the home he shared with Wendy.
    • Lee’s changed role as a carer.

You are aware that Bo and Lee will have important, but different support needs.

  • You note Bo’s behaviours, such as following Lee around. This may be related to missing Wendy and wondering where she is, and/or feeling unsettled or anxious, and missing his former home. You look for gentle ways to recognise Bo’s feelings and provide support. When you are with Bo and he asks for Wendy, you try to name his feelings and show compassion: “It seems you are feeling really upset about Wendy today, Bo. Can you tell me a little bit about her?” or “What was she like?”.
  • You think about whether or not to remind Bo of Wendy’s death.

Care workers: You discuss this with your supervisor/manager as you know that this is not always appropriate, depending on the person with dementia and their specific needs. You also know it is important that the way you respond is consistent with the approach being taken by other workers involved in Bo’s care.

Clinicians: You ask Lee about how Bo has responded to being reminded of Wendy’s death in the past. You know you need a deeper understanding about his reactions (emotional, physical, behavioural) and his capacity to tolerate this information. As Bo may have difficulty retaining the news of Wendy’s death, you want to avoid the risk of retraumatising him or causing unnecessary distress. You offer Lee the ELDAC Grief and Dementia factsheet (281kb pdf) that has tips for supporting people living with dementia who are experiencing grief and bereavement. In addition, you discuss ways to provide consistent grief support for Bo with Lee and others involved in his care, such as with co-workers and team members. You review these strategies over time.
  • You are aware that Lee is likely experiencing ambiguous grief, as her dad is present physically, but changed emotionally and in personality. She is also quite newly bereaved and appears to have had a very close relationship with her mum. You acknowledge and normalise her grief. You begin a conversation by saying something like “I know you are grieving many losses, Lee – the loss of your dad as you knew him before, the death of your mum, and the loss of your own way of life before being a carer… how are you managing all of this?” You listen carefully, allowing time for Lee to express difficult feelings and avoiding problem solving.

  • You are aware that Lee is grieving for her mum while still adjusting to becoming a carer. You can see that this is very challenging for her. You say something like “I can imagine it must be so hard to have become a carer at the same time as the loss of your mum, who I know was so important to you. It’s so natural to be feeling overwhelmed and tired.” You tell Lee that the grief and emotions related to adjusting to a caring role are often difficult for others, too.
  • You talk with Lee about the Dementia Australia National Dementia Helpline (Ph: 1800 100 500). This free service is available 24 hours every day and offers emotional support, information and advice. You let her know that it may be helpful to talk further with someone about strategies to manage Bo’s grief, as well as his behaviours.
Clinicians: Over time, you discuss Bo’s grief and support needs with Lee when opportunities arise. This might be after you observe Bo following Lee while you are in the home, or when Lee tells you she is struggling to respond to Bo’s disinhibited emotions, or when Bo asks questions about Wendy. You share information with Lee to support these conversations, such as: “Is it normal to feel this way?” The complexity of grief from Dementia Australia.

  • Remind Lee about the importance of her own self-care, well-being, and supportive relationships with others as she cares and grieves.
  • Share the Carer Support resources that are available on the CarerHelp website with Lee.
Clinicians: You encourage Lee to explore whether respite might be possible to provide her with additional time for re-engaging with friends and family outside of the home.

  • Thinking about some of the risk factors for complex grief you are particularly concerned about Lee. For example:
    • She appears to have had a close relationship with Wendy.
    • She reports no longer enjoying activities that were previously enjoyable, which can be a sign of feeling depressed.
    • She has withdrawn from friends.
    • She is finding her new caring role to be very hard. Lee is feeling guilty about her reactions to this role, such as feeling that her resentment of this role dishonours her mother.
  • As you have identified these factors, you ensure you follow up regarding extra support.
Care workers: You review the information about risk factors in the ELDAC Grief and Bereavement: Core Concepts for Care Workers (440kb pdf). You discuss your concerns with your supervisor/manager to ensure they are informed about Lee and Bo’s needs. Your supervisor/manager ensures Lee is aware of options for counselling and additional support, including:
Clinicians: You use the conversational prompts from the ELDAC Grief and Bereavement: Core Concepts for Clinicians (721kb pdf) to ask about other areas that may be relevant. For example, any history of mental health concerns and Lee’s experience of her mother’s death. Over time, you review risk and protective factors with other involved team members. You encourage Lee to consider extra support, such as bereavement counselling. You explain that often people find counselling to be beneficial in managing grief and caring and refer her to the options listed above.

Key messages

  • You are well-placed to provide basic grief and bereavement support to people with dementia and their family/carers.
  • People with dementia and their family/carers may be dealing with many layered losses. It is important to keep thinking about ongoing ways that you can recognise their grief, identify needs, provide support, and communicate with others involved in their care.
  • Share relevant information and education on dying, grief, bereavement, and signpost to available support services.
  • Notice where people present with several risk factors that may contribute to negative outcomes related to grief. These may include mental health concerns, including Prolonged Grief Disorder. Seek guidance or discuss support services where you are concerned that people may have extra needs.
  • This case demonstrates the application of the ELDAC Grief and Bereavement Practice Tips for Care Workers (375kb pdf) or Clinicians (441kb pdf). Use these practice tips to guide your own work.
  • The Grief and Dementia factsheet (281kb pdf) has tips for supporting people living with dementia who are experiencing grief and bereavement.