A Guide to Grief: Strategies for Navigating Loss and Dementia

Intro: I'm Dr. Nathaniel Chin, and you're listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.

Dr. Nathaniel Chin: Welcome back to Dementia Matters. It can be difficult to talk about and cope with the grief associated with dementia but it's important for the person with dementia, their family, loved ones and healthcare providers to discuss and process these emotions. Here to help us learn how to navigate these complex feelings and conversations is Dr. Erica Srinivasan, an associate professor of Psychology and director for the Center for Grief and Death Education at the University Wisconsin–La Crosse. She is also the lead instructor of the Grief Support Specialist Certificate at the UW–Madison Division of Continuing Education's Continuing Studies Program and will soon be launching a Dementia Support Specialist Badge with UW–La Crosse's Graduate and Extended Learning. Dr. Srinivasan specializes in grief and loss in her research and is passionate about helping people address these issues and find support. Dr. Srinivasan, welcome to Dementia Matters.

Dr. Erica Srinivasan: Thank you so much. Thanks for the opportunity to speak with you.

Chin: Well, so to begin I'd like to know how you became passionate about grief and loss in your professional career.

Srinivasan: Sure. It was really kind of a series of events, starting when I was in late high school and early college. I worked at an assisted living facility and a lot of the residents who lived there needed to talk about death, either their thoughts on their own dying process or the death of friends and other residents or family members. I noticed that whoever was responding to them largely that conversation would be shut down. They would be met with responses like, “Oh, mom don't talk like that,” if it were if it were adult children or from the other healthcare providers, things like, “Look on the bright side,” or “You're never going to die.” Things that just just aren't true and was just really shutting down the conversation. As I would witness this it really fired up something in me. I found myself really just feeling sad and angry for people who were saying that they needed to talk about death and how they were just being shut down. I noticed that I felt comfortable listening to people talk about death and just really felt like it was like a mission of sorts for me to listen to people talk about death and grief and to try to normalize conversations around that. Around that same time, that age, I was really interested in like existential questions around life and death and then I was in a public library and I just was like wandering up and down the aisles. I like to judge books by their covers so sometimes I walk up and down like random aisles, and if the spine is a pretty color or something like that I'll grab the book. Anyway I was just in a random aisle and like no joke a book fell off the shelf and hit me on the head and landed on the floor. I went to pick it up and put it back. I thought this has hit me on the head. I should look at it. It was this book by Elizabeth Kübler-Ross who is really pivotal in the U.S. death and dying movement and really helped normalize conversations around death, dying and grief. I opened her book. I hadn't heard of her before and was reading something about how we should all have access to a comfortable death as much as is possible or in our control. My heart just started beating fast as it does in these moments that are really intuitive moments for me. I was pretty much hooked on wanting to do something in death, dying and grief.

Chin: That's a pretty incredible story of actually being hit in the head by your future career. 

Srinivasan: (laughs) Yeah.

Chin: Thank you for sharing that. I will tell you too—I see very often family members not want to have that conversation with their loved one and sort of stop the conversation. It isn't, in my experience, it isn't that they want to minimize or invalidate the feelings of the person. In my case it's usually those living with dementia, but they're always so uncomfortable with it. There is this stigma to it or at least maybe a cultural part of this. I'm really grateful when our team came across you and your website. We were very excited about this conversation because it in order to address some of those barriers we really have to talk about it and no better than to talk about it with someone who's comfortable but also an expert in this field. What I'd like to do before we go over some of your work is really go into some of the definitions so that our listeners know. Could you define for us what exactly is grief? What you think of—the stages that you think of in grief?

Srinivasan: Yeah, I think of grief as a response to loss. I think it's really important to notice in this particular definition that I'm not limiting it to one type of response. Often when we hear grief I think it comes to people's minds and some of the definitions you'll read will be: an emotional response to loss. I think it's just responses. It's responses that could happen on many levels. You could have emotional responses, certainly, but also physical responses. Things like feeling tired or achy. You could have cognitive reactions, behavioral or spiritual reactions. It happens on a lot of different levels. It's very multifaceted. I would say also sometimes you see the definition of grief is a response to death but I like to really specify it's a response to loss. That could be death but it could also include non-death losses which I think is especially important to acknowledge when we're talking about people with dementia and people who are impacted by dementia.

Chin: Well, thank you for touching that because the loss part of it is really important. I think I fall into the category that usually thinks of grief when it comes to dying but it really is more than that. To only have it for death, it's a limiting factor for people because we're not thinking that we're grieving something, whether it's a loss of a job, a loss of freedom, a loss of—a change just in the things that we're so used to. In your work do you have a particular focus on the type of loss that you specialize in or are you approaching it and seeing all forms of different types of loss?

Srinivasan: I look at—yeah a lot of different forms of loss. Kind of my two areas or streams of research are looking at grief with dementia and then grief with aid and dying. Within those two topics I'll see different types of grief that are discussed.

Chin: That leads into one of the things I wanted to have you share with us, how is grief different from depression? When does grief or does grief ever become abnormal to the point where it's even pathological and there's a medical diagnosis with it?

Srinivasan: Yeah, that's a great question. You might see some overlapping features with depression or clinical depression and grief. Things like experiencing intense sadness or loss of interest in activities or loss of interest in being social. The difference is, with depression, you're more likely to encompass that in multiple areas of life. More of a free-floating sadness and loss of interest in activities not associated with a particular loss. With grief, we're usually looking at, in addition to sadness, things like intense yearning and preoccupation with the person who died. In terms of when it becomes abnormal, there's not really any one right way to grief but there is something to look out for. There's a clinical diagnosis now called prolonged grief disorder. Prolonged grief disorder symptoms are attributed to the death of a person and it usually involves really intense yearning and preoccupation for that person who died along with other criteria. In addition to these symptoms it would look at the amount of time since the person died coupled with the person's functioning and safety and also social, spiritual and cultural norms around grief. There's overlap but you may or may not see intense sadness with grief. We have lots—there's lots of different types of reaction with grief. Then it's going to be specifically around the death rather than a free-floating sort of sadness or loss of interest in activities.

Chin: One of the things you said though that resonates is it also seems to be—you have to put it in the context of the individual, their cultural, spiritual beliefs, but it does seem to be impacting them at that level of function whether it's—I heard you use the word function there. Maybe it's whether it impacts their work or their ability to engage with their loved ones. It does seem like it's more than just “I'm experiencing this” but it's actually affecting how I live my day. Does that seem fair to say?

Srinivasan: Yeah. It's really for a prolonged period of time having difficulty functioning, having difficulty taking care of oneself or maybe one's safety is harmed. I think that's pretty key in looking at that concept.

Chin: Would you say that the grief people experience surrounding dementia, a progressive condition where people lose cognition and their function, is that different to other kinds of grief? If so, can you describe how that would manifest itself differently than losing a loved one to a different disease?

Srinivasan: Yeah, I would say that there's a few types of grief in particular that we see around dementia. One is anticipatory grief and that's grief that's occurring before a loss. This could be experienced from the viewpoint of the person with dementia or family members, care partners, healthcare professionals and everyone would sort of have their own viewpoint with the anticipatory losses and griefs. A person with dementia, for example, might anticipate losses around changes in relationships and identity or concerns with losing autonomy and independence. The family care partner or family member might have anticipatory grief also around similar things around changing relationships but maybe also anticipating the eventual death. Another helpful concept in dementia and grief studies is ambiguous loss. This is the type of loss where there's no verification of death and no confirmation that the person will return or come back to the way they used to be. This will make more sense when I explain the two types. There are two types. One is when a person is physically absent and psychologically present. This could be a situation of a missing person or an estranged relationship with a family member. Then there's type two where a person is psychologically absent and physically present. This occurs in a situation like dementia where the person as we knew them to be has changed or their identity has changed or the way we perceive their identity has changed but they're physically present in front of us. For family members and care partners of people with dementia, for them it will  feel like they're grieving in a way that someone has died before they have actually died. I speak to a lot of caregiver groups and I'll share this concept with them and if people haven't heard of it before, really, really strong responses, a lot of crying because people feel validated in their grief. They've been holding a lot of guilt and questioning why am I grieving as if someone has died when they haven't died. I think it's really validating to hear that this is a common experience particularly around dementia and that there's a body of education and literature and research around it and that there's no need to carry that guilt. It really validates people to hear about this concept.

Chin: Is ambiguous loss then mostly for the people involved in the care or the family, the friends of those living with dementia?, or can someone with dementia experience ambiguous loss too?

Srinivasan: I would say when a person is in the early stages of dementia—so when they are aware that they are not remembering things, if that's the way that dementia is presenting—they could experience a sense of themselves, sort of, as they know themselves to be not being there but yet they are physically alive and there. So, yeah. Another item that comes to mind is thinking about people with young-onset dementia, so diagnosed with dementia before the age of 65, and then those with late onset after the age of 65, or I think more commonly like 85 and up or the risk would go up then. I'm just thinking about how the anticipatory grief and the anticipated losses are different whether you're young-onset or older-onset. With younger-onset, there's some things that are really unique to the younger age especially in the U.S. with insurance often being tied into our workplaces. There's that concern of not being retired yet and maybe being a financial provider in the family and kind of questioning like, when do you tell other people that you have this? When do you leave your employment? Should you leave your employment? Those sorts of things. Or maybe worrying about care of children or grandchildren and having less support in that whole process because there's less number of people with younger-onset dementia yet a significant number that they also, like anyone, would need resources and research and support groups and things like that but we see less resources for that group.

Chin: No it's such a great point, Erica. Actually, we've done a podcast with Diana from Lorenzo's House and her group, Lorenzo's House, focuses on younger-onset dementia. They shared with us how this is a different experience. Not to take away the experience of older adults or even older adults, but there are different impacts at a younger age. No, I think that's a really, really great point. In your answer to my next question, it could be the younger-onset or older but I know in the work you do, part of it is helping people address grief. Not that there's a one-way-only policy but have you found strategies that tend to be more helpful than others?

Srinivasan: I think acknowledging one's own grief and validating grief is very helpful to do and to avoid judgment. I mentioned before with ambiguous loss, before people realize that that's what's happening they can be very judgmental of themselves. Why am I grieving? Why do I have this grief? And really important to not feed that guilt and to just acknowledge you have grief and that is valid and to find ways to work with that. I also think it's really important and helpful, for grief, to express it in some way but I like to remind people that that doesn't have to happen through talking. It can certainly with grief support groups or talking to a counselor or a friend or a healthcare provider but some of us aren't very emotive or—I'm a pretty emotive person but not when I'm initially experiencing a loss. I have a lot of anger that comes up in my grief process, whatever it is I'm grieving. Then I'm a little afraid of, by accident, lashing out at someone or just a little afraid of my anger that comes up yet I still need to express that. For me, initially usually, with loss I really like expressing it through writing. Doing an exercise where I'll maybe set a timer for five minutes and write in a very uncensored way. That's a really important part of that process, to just give yourself permission to write and let out whatever feelings whether they're fair or not. To not analyze them but just to express. Or things like talking to a tree or talking to a stuffed animal. Just remembering that that expression doesn't have to come—or doing art. So it doesn’t have to come specifically through words or talking with another person but it can.

Chin: And what suggestions do you have for friends or family who want to help their loved one experiencing grief? Maybe the loved one has expressed it and they're not sure how to do it or or or even how to initiate that conversation. What do you recommend in those situations?

Srinivasan: Well, I would say if someone isn't initially talking about grief that it's important not to push them. Sometimes we, to emotionally protect ourselves, we know it's too much to look at grief. And to remember that people grieve very differently and there's no right way to grieve. For one person, they might want to return to work right away or be busy with a lot of tasks and to another person that might look like some form of denial but it isn't necessarily. That person who returns to work or is doing fundraising for a memorial or getting into activities right away might be more of what's known as an instrumental or a head griever where they need more of those sorts of tasks than outward emotion. I would remind oneself that grieving looks really different—some people are emotive, some people are not, some people are a mixture—and to more look at is someone having unhealthy coping, which would be maybe really engaging in heavy substance use, and to sort of go from there. Otherwise just letting people know that you're there and present. Maybe they don't want to talk about the grief but letting them know if they ever want to, that you're there to listen. Then reminding oneself in that process that we can't fix someone else's grief and that's not any of our roles but we can provide support. We can provide a listening ear. Check in on someone who's grieving and consider offering substantial help, things. Rather than just saying, “Let me know if you need something,” because it can be hard when you're grieving to know what you need, offer and say something like, “I'd like to bring you over a meal tomorrow if you'd like that. Can I drop something off?” So you give them that space to say no. Maybe they really need time to themselves and they don't want someone dropping off a meal but you can offer a specific suggestion. Or “I'm going grocery shopping. Can I pick you up some groceries and drop them off?” That sort of thing.

Chin: Yes, so being specific seems to be helpful and not just the vague, “well let me know if you need anything from me.

Srinivasan: Yeah. 

Chin: Well then moving to more of the clinical space then, for our listeners who are healthcare care providers, do you have any recommendations for them on how to support individuals, presuming they are patients then and their loved ones, when dealing with grief loss or even just the dementia process?

Srinivasan: Yeah I would say a pretty similar answer. I would say to validate and acknowledge the grief that someone might be going through. It might be helpful to give them some of those terms of what you're experiencing is ambiguous loss or anticipatory grief and give them related resources. I would also say, for healthcare professionals, I think it's really important that they also support themselves. It's unfortunately an area where there's a lot of disenfranchised grief or grief that is minimized or the pressure to feel like I can’t show or experience grief because I have other people to take care of or this idea that it would be unprofessional. Lots of different reasons. We don't have great grief support for health care professionals but I think if a health care professional can find a way to maybe, if there isn't anything formal in place, to debrief with a colleague or to do a grief ritual at home or do some of their own writing. That sort of idea that we can't take care of other people unless we take care of ourselves. Yeah, doing that and otherwise also remembering like you can't fix someone's grief but to do the same things like acknowledging and validating their grief and checking in. I think a lot of the time too with grief, we care about the person so we want to fix their grief. Sometimes that all also sort of makes us rush to say something quickly or not really think clearly about what we want to say. Just to remember that there's a lot of power in listening. Sometimes we're so afraid that we want to say the right thing that then we don't reach out to people because we don't want to, by accident, offend them. I would say that that's even more offensive or sometimes more isolating for that person if you never bring up the person who died or never bring up their grief. To just kind of get over that discomfort and ask how the person is doing. Let them know, too, if you don't  want to talk, that's fine. Or if it bothers you, me asking, I won't but I just wanted to, at least one time, check in with you. To remember too if you do say something that's a little awkward or later you go home and think, oh that wasn't that wasn't the most supportive thing to say, that you can always go back and apologize or say to the person and remind them of your intention.

Chin: Are there any resources or organizations that can be helpful for those experiencing grief, particularly surrounding the dementia diagnosis and process?

Srinivasan: Yeah. That is also another response I would give to that previous question. I'll add to that that it's important for health care professionals I think to, as much as they can, be familiar with the resources in their area both online and in person so that they could get a list of resources and supports to that person who is grieving. In terms of organizations that can be helpful for people experiencing grief, particularly around a dementia diagnosis, there's a lot of great websites and resources. I would say your podcast Dementia Matters is one where people can learn a great deal about dementia from a variety of experts both professional and people in their personal lives who are experts—and really probably the best experts because they are living with dementia or caregiving, care partnering for someone with dementia. Also organizations. There's one in Canada—-Canadian Virtual Hospice—and they have an affiliated website. Mygrief.ca. They have a lot of different modules around grief. They've got one specifically for grief with dementia but also lots of modules just about grief in general. It’s a very helpful organization and it's accessible all over the world. The Alzheimer's Society of UK is another website. I really appreciate the information that they have on their website. I think, just locally, for anyone to try to connect with their local aging and disability resource center so they would be able to connect people with resources around grief but also be able to kind of take inventory and see if there are other resources other than grief that a family or a person with dementia needs.

Chin: You lead the Grief Support Specialist certificate at Continuing Studies here UW–Madison. Can you share a bit about what that certificate focuses on and who might be interested in taking it?

Srinivasan: Sure yeah. That's a really meaningful part of my work. I really love facilitating and teaching this certificate. It's entirely online but it's pretty interactive. We have several different modules. The first one is kind of looking at the landscape of grief, looking at grief theories and why and how we grieve. It looks at different grieving styles. Then we have another module on particular forms of grief, like ambiguous loss and anticipatory grief, and also looking at just the wide number of factors that influence the grieving process. Another module is on therapeutic grief activities. All the students in the class engage in therapeutic grief activities. We have a module on examining one's own self-care practices and then also cultural humility when working with others. There's a lot of emphasis on exploring one's own grief but also on supporting others. We have discussion boards that are very interactive. My favorite part of the class is that, everyone in the class, we learn so much from each other because everyone is their own expert on the losses that they've experienced. A lot of people too come from a wide variety of professional backgrounds where we can all learn a lot from each other.

Chin: Well to end today Erica—and you've answered a lot of this so if there's anything you wanted to add to your prior answers—for those who are currently going through grief, whether it's because of a loss of a loved one, their own cognitive impairment diagnosis or process, or loss of any other kind as you've explained, and they're recognizing it—- am experiencing grief—do you have any advice for them as far as what to do in the next moment after you've recognized, I am experiencing this and I’m wanting to take whatever the next step might be?

Srinivasan: Yeah, I think somatic practices are really important. When I think about grief and that physical component or physical reactions of grief, there's so much where we're really holding our bodies with a lot of tension. People may forget to breathe or may forget to drink water. I think it's important just initially to check in with your body and make sure you're breathing, make sure your feet are on the ground. You might check in with your jaw or shoulders to notice if you're tensing them or not. It can even be helpful to make a checklist. For example, I like a checklist that says, did I drink water today? Did I get fresh air today? That you can just go through and check off and see whether you did those or not. That can kind of help with staying on track with those things that can help our bodies. When people are grieving, it's often just you forget. There's the cognitive reaction. If you have a sheet of paper or on one's phone where you could just go and check off, okay I've done these things or I need to do these things. I would say also to remember that there's no right way to grieve and it's important not to judge one's grieving process, that it's happening whether we're aware of it or not. To be open to support, social support, can be really helpful with grief and be open to expressing grief in some form. Again, remembering that it doesn't have to be through talking if a person isn’t a talker. To just remind oneself that you have the ability to integrate grief into your life. It can take time and grief isn't linear. There's going to be moments where 10 years passed, 20 years, 30, 40, 50, and you still maybe might feel a big grief burst or a wave of intense grief, but not to judge oneself for that or to think you're doing it wrong. Just to remember that is the nature of grief and that we have the ability to integrate that into our lives while still honoring the person who died or feeling a sense of connection to them. I think often with grief, too, I think about how there's this conflicting experience where we want to be done grieving. We want to feel better. Sometimes also this thought or feeling that if we work through our grief, we're going to forget that person who died or or it means we don't love them or something like that. I think really getting that learning that you can hold both at one time so you can feel better in life and integrate that grief and loss into your life while also still keeping a sense of connection to the person who died.

Chin: Well is there any way to end better than that? Thank you, Erica. That was very thoughtful. I do love that you came back to breath and hydration. Those are so important. With that, thank you for being on Dementia Matters. This is, again, Dr. Erica Srinivasan. We will have a link in our show notes to your continuing education course. Thank you so much for being on the show today.

Srinivasan: Yeah, thank you very much.

Outro: Thank you for listening to Dementia Matters. Follow us on Apple Podcasts, Spotify or wherever you listen. Or tell your smart speaker to play the Dementia Matters podcast. Please rate us on your favorite podcast app. It helps other people find our show and lets us know how we're doing. If you enjoy our show and want to support our work, consider making a gift to the Dementia Matters Fund through the UW Initiative to End Alzheimer's. All donations go toward outreach and production. Donate at the link in the description. Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center at the University of Wisconsin–Madison. It receives funding from private, university, state and national sources, including a grant from the National Institutes on Aging for Alzheimer's Disease Research. This episode of Dementia Matters was produced by Caoilfhinn Rauwerdink and edited by Alexia Spevacek. Our musical jingle is “Cases to Rest” by Blue Dot Sessions. To learn more about the Wisconsin Alzheimer's Disease Research Center, check out our website at adrc.wisc.edu. That's adrc.wisc.edu and follow us on Facebook and Twitter. If you have any questions or comments, email us at Dementia Matters at medicine.wisc.edu. Thanks for listening.