Skip to main content
Submitted by Arunai Thelirc… on 12 September 2018
Stock pic of a younger person in a white top and black pant supporting and holding hands with a seated silver haired elderly lady in a green top

Caregivers of persons with dementia are often unsure how to talk about the loss of a family member or friend. Porrselvi A.P., a cognitive and psychosocial interventions specialist shares tips on how to break the news and how to help the person with dementia deal with the news.

Supporting a person with dementia who is grieving the death of someone close to them cope with the loss is challenging for many caregivers. Often, in the daily grind of caring for a person with dementia we forget that loss of cognition does not mean the loss of emotions. Grief is a normal response to loss. It is something that we feel when we lose something or someone, but mourning is the expression of the grief we feel. The mourning process requires cognitive skills to make sense and resolve the sense of loss and grief. A person with dementia either does not completely have the required skill set or may have lost them partially.

A very common technique used by carers is to protect the person with dementia from the truth, especially if the deceased person does not live in the same house. This is a good and easy technique to avoid grief in the person with dementia. But, it must be used only if the dementia is in the advanced stages and/or when the deceased and the person with dementia do not have a close relationship or a pattern of communication (e.g. meeting at the park regularly, call each other once a week or month or once a year (e.g. on their birthday) etc.).

Expression of grief is affected by many factors: the stage and type of the dementia, level of loss of awareness, how close the relationship was with the deceased and how well the person with dementia can express their feelings.

Related Reading: Caregiver's Grief and Healthy Ways to Grieve

Grief may be expressed by a person with dementia as agitation and restlessness. They may have a foreboding sense that something is not right, or a general feeling that someone who is close to them is missing or may feel as if they are unwell. The person may confuse the present loss with an earlier one, which was shocking to them as well. The person may or may not be able to retain the information that the person has died and may continue to refer to them as if they were alive. They may even get confused as to who died.

If possible and required, the person with dementia must be informed that someone close to them has died. This is especially important if the person with dementia has regular contact with the person or has a significant relationship with the deceased. If other people at home are upset about the loss, it is better to tell the person than try to pretend that everything is all right as he or she may notice the cues sadness of others and may get confused. They may even assume it is because of them.

Tips to break the news:

  • Find a time of day when the person is at their best and rested, in most cases mornings post-breakfast. The news can wait until the person is calm and does not have to be conveyed immediately.
  • It is best if one person is delegated to break the news, preferably the primary caregiver or someone they feel close to.
  • Find a quiet comfortable place at home and stay calm.
  • Use body language to express your sadness (eg. hold their hand) but don’t overdo it.
  • Keep the sentences short.
  • Do not give too much information at once.
  • Do not use euphemisms such as “passed away” or “gone to a better place” etc.
  • Do not rush and be prepared to frequently repeat the information.

After breaking the news:

Support the person with dementia to attend the funeral, especially if it is a close family member or friend who has died. Do not worry - people with dementia tend to behave appropriately at such events. They recall the decorum required of such occasions and can take many cues from the setting and from others. Again, this depends on the type of dementia and level of awareness and hence the caregiver must exercise proper judgement.

Reminiscing is comforting after bereavement and aids the grieving process. Try using photos, videos, objects and sharing stories about the person. This might help the person with dementia to talk about how they feel.

Placing a photo of the deceased with obvious cues like a garland might help orient the person with dementia.

The person with dementia may continue to ask for or about the person. A gentle reminder may work sometimes but often being reminded that the person has died is greatly upsetting. It will be as if they are hearing the news for the first time, with each reminder having the same upsetting effect as it did when you first broke the news.

If the person seems unaware of change and is not distressed, it is okay. Don’t try to force reality on him/her.

Always use the past tense when speaking about the deceased as this will help orientate the person.
Be responsive to the moment, paying attention to the mood of the person and responding appropriately.

If the person seems sad or angry or there is any other unexplained change in behaviour, provide support for these emotions. This can be by sharing your own emotions and thoughts like “I miss him too”, “He used to be so good at making us laugh” etc.

Always look out for signs of depression- like changes in sleep pattern, social withdrawal, restlessness or being too passive etc.

Look for any patterns as to when the person is asking about the person who has died. Is it always early evening or always in the morning? Is it related to a routine that the person shared with the deceased? If you can spot a pattern, then having the distraction in place or fulfilling a routine before the questions start may help.

Mr. K asks for his deceased wife Mrs. L. The response to his question “Where’s L?” could be the blunt truth (“She died last February”) or avoidance (“She might be in the other room”). If regularly responding to their emotions and reminiscence is not working then, as a last resort, try distraction, bearing in mind that this will not help the grief process but may alleviate the stress of the moment. Always be prepared for an upsetting reaction.

Be consistent. It is essential that there is good communication between all family members and professionals about what techniques are being used to manage the bereavement. Everyone involved must react and use the same methods to avoid confusing or upsetting the person.

Most importantly,

Take time to address your own feelings, which is very important, especially if you are the primary caregiver. Do not hesitate to ask for help from others in dealing with either your own grief or the person with dementia’s grief.

Condition

Stories

  • घर में बुजुर्गों के गिरने से बचाव के लिए बदलाव करें
    बुजुर्गों में चोट लगने का प्रमुख कारण शायद उनका गिरना है। गिरने की वजह से चिकित्सा के और रीहैब (पुनर्वास) के खर्च भी बहुत ऊंचे होते हैं। इस लेख में  पोरसेलवी ए.पी., एक संज्ञानात्मक और मनोसामाजिक हस्तक्षेप विशेषज्ञ, साझा करती हैं कि घर में बुजुर्गों के गिरने से बचाव (फॉल प्रिवेंशन) के लिए कैसे बदलाव संभव हैं - जैसे कि हैण्ड-रेल लगवाना, एंटीस्किड (फिसलन विरोधी) मैट का इस्तेमाल, घर में अत्याधिक और अव्यवस्थित सामान को हटा कर घर व्यवस्थित करना, संतुलित रखने वाले मजबूत जूते पहनना, इत्यादि।…
  • Managing stroke dementia parkinsons migraine and other neuro conditions - interview with neurologist Dr Wadia
    Webinar: How To Manage Neurological Conditions During Covid-19 Pandemic
    Dr Wadia helps patients with Neurological Conditions and their primary family caregivers navigate this Covid-19 lockdown period with expert advice on managing emergencies and complications. Click on the video link below to view the webinar recording.  Let’s discuss the major challenges patients may face during this COVID pandemic: Identification and management of neurological emergencies, so you know when to avoid unnecessary trips to the hospital. Emergency scenarios will include Stroke…
  • A woman in bed being tended to by a person in green scrubs with a stethoscope
    We Need More Palliative Care Centres For Neurological Disorders
    With growing occurrences of neurological disorders, an increased collaboration between neurology and palliative care or neuropalliative care services has become imperative, stresses Dr.Kaustubh Mahajan, neurologist at Hinduja Hospital, Khar. Also an extract from a paper presented by neurologist Dr Roopkumar Gursahani. What is the role of palliative care in patients with neurological diseases? There's a definite and very important role of palliative care in neurological diseases. There are so…
  • Dealing With The Behavioural Challenges Of Alzheimer's
    Nishi Pulugurtha writes about the challenges of being a caregiver to an Alzheimer’s patient, her mother, and the travails that came with it. “Let us go home,” Amma said this often. There was nothing strange about this sentence, all of us would love to be back home at some point of time or other. What makes Amma’s statement important is that when she said this, she was actually at home. I used to tell her that. It made her keep quiet for a while. She would go back to doing something. It was…
  • Getting a Dementia Diagnosis: Clear and Practical Suggestions for Families
    Swapna Kishore, a dementia resource person, talks to Dr. CT Sudhir Kumar on the importance of getting a dementia diagnosis and not treating it as a normal ageing process, how to select the right doctor, how to plan for a doctor consultation, the tests that the doctor may prescribe and how to plan reviews with your doctor.   When someone shows symptoms like memory problems, confusion, unclear speech, inability to plan, or strange behaviour, we may wonder whether this is dementia and…
  • Leading Causes And Precautionary Interventions For Falls in Persons With Dementia
    Ms. Ayush Chandra and Ms. Sradha Madan Ray under the guidance of DEMCARES, SCARF India write about the leading causes for falls in persons with dementia and how caregivers can prevent these falls.  According to WHO risk of falls in old age increases due to several factors such as changes in physical function, sensory input, and cognition. For a patient with cognitive impairment the risk is doubled and can lead to more complications (Scala G & Kraemer, 2009). Being aware of the…
  • Mausumi, a dark haired woman on the right with her mother, a person with dementia on the left. Mother is wearing specs and  a bindi on her forehead and you can see the blue and white sari draped around her shoulders
    Patience And Innovation Are The Most Important Attributes Of A Caregiver For Persons With Dementia
    Mausumi Ghosh from Mumbai talks about the travails of taking care of her mother, 77 who suffers from dementia in addition to other conditions like osteosporosis. My mother is an osteoporosis patient from 2003 when she underwent hip replacement operation in Mumbai. She recovered from the same very well and was mobile and independent till she met with a ‘fall’ at home in 2010 and broke her ‘femur bone’ (left leg). She got herself operated twice in Kolkata in AMRI hospital and both the times the ‘…
  • Stock pic of a younger person in a white top and black pant supporting and holding hands with a seated silver haired elderly lady in a green top
    How To Support A Grieving Person With Dementia
    Caregivers of persons with dementia are often unsure how to talk about the loss of a family member or friend. Porrselvi A.P., a cognitive and psychosocial interventions specialist shares tips on how to break the news and how to help the person with dementia deal with the news. Supporting a person with dementia who is grieving the death of someone close to them cope with the loss is challenging for many caregivers. Often, in the daily grind of caring for a person with dementia we forget that…
  • Image Description: An elderly person with a walker and supported by a caregiver
    12 Confusing and Overlapping Symptoms in the Elderly
    Symptoms like weight loss, memory loss, weakness, and fatigue should not be mistaken as a sign of the"normal aging" process. Dr. Shital Patel explains 12 common but misleading symptoms in the elderly and why you should seek a doctor's opinion instead of ignoring them.  Symptoms in the elderly can have very different causes than they may have in a young person. Many symptoms in the geriatric population may be masked by concurrent chronic ailments, injuries, age-related physiological…
  • A caregiver in a white dress does an activity with an elderly person with dementia in red and grey
    Memory Stickers for Moderate Middle Stage Dementia
    People with moderate stage dementia can continue to perform their regular daily activities with a little bit of support. Social worker Mangala Joglekar, who runs several programs for the dementia community and has set-up the Memory Clinic in Deenanath Mangeshkar Hospital, Pune, shares 5 examples of coping strategies for better living. And Advice for Caregivers. Moderate stage dementia could be said to start when cognitive inabilities can no longer be hidden. It is considered as the longest…