Grief and bereavement for people living with dementia

                                                                          Guest post by Helen Findlay                                    

What is grief and bereavement?

Can we ever truly describe in words how it feels even though we may be feeling all manner of intense emotions and thoughts? Is there etiquette to it? Should we hide away from others? Should we not give in to public displays of grief whatever that may mean? Is there an accepted time limit to getting over the loss of someone close to you?

At times of grieving, it is possible to find refuge in literature to try and find something that may explain the void in the soul. Such as in the writings of great poets like Keats. Or in the incisive and resonating lines that capture complex and virtually indescribable states and feelings that come from authors like CS Lewis to be found in his book “A Grief Observed” (1961 Faber). Whether such writings offer comfort is moot but at least they may help to give some kind of frame to how we are feeling and assuage the notion that we are alone in our grief and no-one else has ever felt like this.

If it is difficult to assimilate and find ways of coping with the intense trauma that the death of a loved one can provoke, then how is it for someone who has dementia?  How does someone with dementia understand what has happened when someone close to them, perhaps their spouse, is no longer there?

Can they really comprehend what has happened?

Can someone with dementia express sorrow or be upset? If so, then how do they express it and how would others know that is what they are doing?

Family members and others who care for loved ones who have dementia may well have had to cope with this situation. Perhaps when caring for an ageing parent with dementia and their wife, husband or partner dies first possibly after many decades of being and living together. Suddenly the safe and enduring environment in which the person with dementia has been cared for is disrupted forever.  An important relationship has come to an irrevocable end.

holding hands old coupleSome may say that people with dementia are not aware of what is happening around them, they have memory problems and difficulties with recognising those who are close to them anyway, so if one of them dies it won’t really touch them that much. We can try and console ourselves with that notion if we wish. It helps us to cop out of having to engage in a difficult conversation with the person who has dementia.

When looking into this subject to see whether the world of academic research could throw some light on this, it became obvious that there isn’t very much out there. There is a report published in 2010 in the American Journal of Hospice and Palliative Medicine by Gataric,  Kensell, Gauby Currie and Lawhorne. It is a report written following a symposium on grief and dementia and is called “Reflections on the under-researched topic of grief in persons with dementia.”

This report acknowledges that “one of the most profound losses experienced by adults is the death of a spouse” (p567). A number of models of the mourning process have been put forward elsewhere that describe what a bereaved person may go through such as shock, acceptance, pain, adjustment and moving on. Although anyone who has experienced grief will understand that it is not as linear a process as these models imply – more like riding a rollercoaster and waking up each day not knowing which part of that rollercoaster ride will show itself – up, down, in a dip, on a high, going round the bend.

The report on grief in persons with dementia points out that people with cognitive impairments do have “an impaired sense of awareness, inability to verbalise their distress and inability to express feelings associated with the loss that can be understood” and that “it is established that non-cognitive processing capacities exist in both normal and brain damaged individuals and may influence behaviour” (p567). In other words, people living with dementia can feel grief  – we just don’t necessarily know how to recognise it or how best to support the person who is feeling it. There is a tendency to shy away from giving people bad news in many circumstances, even more so if the reaction of the person being told is unpredictable. There are suggestions in the grief and dementia report about strategies for supporting a person with dementia who has suffered loss such as the spiritual, distraction and deflection which is where a person is encouraged to concentrate on something else perhaps listening to music, reading or being read to, hand massage for instance. Sometimes these strategies work and sometimes they don’t.

Those attending the symposium on grief and dementia pointed out that there is “insufficient data to produce evidence-based guidelines for the care of people with dementia who experience bereavement” (p573). Indeed, one could say there is insufficient data to produce guidelines on the whole range of cognitive experiences that people with dementia go through as the disease progresses.

The grief and dementia report recognises the need and calls for more research to be carried out on the experience of grief for people with dementia. Any future research should include people who are living with dementia, as should those who are caring for them. Stories of how people with dementia have coped when someone close to them has died and the experiences of those trying to care for and support them should be gathered and used to generate and inform any guidelines that are produced.

Family members and others who have experience of caring for someone with dementia through grief and bereavement should be included from the start in any research projects. People who have experienced the gut-wrenching trauma that can strike in an instant when a loved one suddenly asks a year after their spouse has died, even though it has been explained to them and they attended the funeral, where their wife or husband is and when are they next coming to visit has an important story to tell. They are all experts by experience.

Everyone has a right to feel their own grief and have the space and understanding to be able to deal with it in their own way. Grief after the death of a loved one has a profound effect on a person’s life. If that person is living with dementia, it does not make it any less their right to have those feelings and have help and support to get through it however difficult it may be for those around them whether professionals, family or other people who are important to them. See the person, not the dementia.

Useful references:

Grief C., Myran D, 2006, “Bereavement in cognitively impaired older adults: case series and clinical considerations”, Journal of Geriatric Psychiatry and Neurology, vol. 19, no. 4, pp209-215 

Rentz K., Krikorian R,. Keys M, 2005, “Grief and mourning from the perspective of the person with a dementing illness: beginning the dialogue”, Omega, vol. 50, no. 4, pp165-179 

Orrell M., Bebbington P, 1995, “Life events and senile dementia. Affective symptoms”, British Journal of Psychiatry, vol. 166, no. 5, pp613-620 

If you wish to contact Helen, please send your contact details to us at –   –  and we will forward them on to her.



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