Grief and neurological impairment - PowerPoint Presentation

Slide1

Grief and neurological impairment

Jonathan Cole

Poole Hospital and University of Bournemouth

jonathan@colefamily.org.uk

Slide2

Grieving in people with neurological impairment

Jonathan Cole

Poole Hospital and University of Bournemouth

jonathan@colefamily.org.uk

Slide3

Grief; OED

.

Feeling of offence, displeasure, anger, 1573

Hurt, harm, mischief inflicted or suffered, molestation, 1584

Physical pain, 1621

Hardship, suffering; a kind of cause of these, 1722

A sore or wound, 1727

Slide4

Grief; OED

.

Feeling of offence, displeasure, anger, 1573

Hurt, harm, mischief inflicted or suffered, molestation, 1584

Physical pain, 1621

Hardship, suffering; a kind of cause of these, 1722

A sore or wound, 1727

Mental pain, distress, sorrow, caused by loss or trouble; keen or bitter regret or remorse

, ME.

Slide5

Definitions I

OED.

Intense sorrow, especially caused by someone's death.

‘she was overcome with grief’

informal

Trouble or annoyance.

‘we were too tired to cause any grief’

Slide6

Definitions I

OED.

Intense sorrow, especially caused by someone's death.

‘she was overcome with grief’

informal

Trouble or annoyance.

‘we were too tired to cause any grief’

Medical on-line

.

The normal process of reacting to a loss. The loss may be physical (such as a death), social (such as divorce), or occupational (such as a job).

Slide7

Definitions I

OED.

Intense sorrow, especially caused by someone's death.

‘she was overcome with grief’

informal

Trouble or annoyance.

‘we were too tired to cause any grief’

Medical on-line

.

The normal process of reacting to a loss. The loss may be physical (such as a death), social (such as divorce), or occupational (such as a job).

Emotional reactions of grief can include anger, guilt, anxiety, sadness, and despair. Physical reactions of grief can include sleeping problems, changes in appetite, physical problems, or illness.

Slide8

Definitions II

Anticipatory grief

;

before an impending loss; the death of someone close but also experienced by dying individuals themselves.

It can be from non-death-related losses such as mastectomy, pending divorce or company downsizing.

Complicated or prolonged grief

;

when an individual’s ability to resume normal activities and responsibilities is disrupted beyond six months of bereavement.

Slide9

Lomas, The

flavours

of love: A cross-cultural lexical analysis

The Theory of Social

Behaviour

,

2018.

DOI: 10.1111/jtsb.12158

John Lee (1970), identified

styles of love

;

three primary forms of love;

Eros

- passion and desire,

Ludus

- flirtatious, playful affection,

Storgē

- familial or companionate bonds of care.

three secondary;

ludus

+

storgē

=

pragma

,

a rational, sensible long-term accommodation.

eros

+

ludus

=

mania

, possessive, dependent, or troubled intimacies,

eros

+

storgē

=

agape

, the charitable, selfless compassion

Add;

non-romantic care, affection and loyalty towards family (

storgē

), friends (

philia

), and ourselves (

philautia

).

Romance add the passionate desire of

epithymia

, and the star-crossed destiny of

anánkē

Slide10

The bitter tastes of grief

Loss of person

Loved one; child, partner, parent, sibling, friend…

Timing of loss in relation to their and your life and shared time together

Circumstances of loss or its anticipation, e.g. traumatic, slowly progressive.

Loss of previous self

; either sudden or progressive;

Embodied self, e.g. spinal cord injury, stroke, MND, Parkinson’s disease, HD etc.

Communicative self, either receptive or expressive; blindness, deafness, paralysis

Loss of place or object

Car, I-Phone, moving from loved area etc.

Loss of adopted identity

e.g. Brexit

Slide11

The bitter tastes of grief

Loss of person

Loved one; child, partner, parent, sibling, friend…

Timing of loss in relation to their and your life and shared time together

Circumstances of loss or its anticipation, e.g. traumatic, slowly progressive.

Loss of previous self

; either sudden or progressive;

Embodied self, e.g. spinal cord injury, stroke, MND, Parkinson’s disease, HD etc.

Communicative self, either receptive or expressive; blindness, deafness, paralysis

Loss of place or object

Car, I-Phone, moving from loved area etc.

Loss of adopted identity

e.g. Brexit, Relegation of football team.

Slide12

The bitter tastes of grief

Loss of person;

Loved one; child, partner, parent, sibling, friend…

Timing of loss in relation to their and your life and shared time together

Circumstances of loss or its anticipation, e.g. traumatic, slowly progressive.

Loss of previous self; either sudden or progressive;

Embodied self, e.g. spinal cord injury, stroke, MND, Parkinson’s disease, HD etc.

Communicative self, either receptive or expressive; blindness, deafness, paralysis

Loss of place or object;

Car, I-Phone, moving from loved area etc.

Loss of adopted identity;

e.g. Brexit.

Continuing presence of altered state/grieving for lost one?

Slide13

Lecture plan

Grief and depression

Types of grief; prolonged or complicated as a psychiatric condition - definitions

Julian Barnes Levels of Life

Neurological Impairments;

Stroke

Parkinson’s Disease

Spinal Cord Injury

Visual loss.

Slide14

Grief and depression?

DSM-IV;

clinicians cautioned against diagnosing depression after bereavement to avoid categorising any initial depressive responses to bereavement as a mental disorder. It advises a depression diagnosis only if the state persists for at least 2 months following the death and is characterised by signs of more serious depression, such as suicidal ideation or psychomotor retardation.

DSM-V

proposes this qualification should be removed, partly because of evidence that bereavement-related depression is comparable to depression following other life stressors.

Proponents of the change argue that excluding bereavement-related depression might prevent depressed bereaved people from receiving care.

Opponents that removing the bereavement exclusion potentially medicalises acute grief, and might lead to unnecessary antidepressant treatment of normal distress.

Grief as a psychiatric disorder

Richard A. Bryant

The British Journal of Psychiatry Jul 2012, 201 (1) 9-10;

DOI:

10.1192/bjp.bp.111.102889

Slide15

One depression, one grief?

Recent data indicate that depression in the context of bereavement tends to be less severe and less likely to return than depression unrelated to bereavement, suggesting that it may not be comparable to other forms of depression – and providing support for caution in prescribing antidepressants following bereavement.

The extent to which depression following bereavement is comparable to depression after life stressors has yet to be adequately resolved. At present there are insufficient empirical data to shape diagnostic decisions addressing the distinctions between expected (and transient) and complicated (and persistent) depression after bereavement.

Grief as a psychiatric disorder

Richard A. Bryant

The British Journal of Psychiatry Jul 2012, 201 (1) 9-10;

DOI:

10.1192/bjp.bp.111.102889

Slide16

CharacteristicBereavementMajor depressive episodePatternWaves or pangs of grief associated with thoughts or reminders of the deceased that are likely to spread further apart over timeNegative emotions experienced continually over timePredominant affectEmptiness and loss accompanied by occasional pleasant emotionsPervasive depressed mood and the inability to anticipate happiness or pleasureSelf-esteemTypically preserved, but if self-derogatory thoughts are present they usually involve perceived failings in relationship to the deceased (e.g., not visiting the deceased more often, failing to communicate their love enough to the deceased)Critical toward self, feelings of worthlessness, and self-loathingSociabilityMaintains connections with family and friends who have ability to consoleWithdraws from others physically and emotionally and has difficulty being consoledThoughtsPreoccupation with thoughts and memories of the deceased; tends to be hopefulSelf-critical or pessimistic thoughts; tends to be hopelessThoughts of death or suicideThoughts of death and dying focused on the deceased and perhaps reuniting with the deceasedExplicit suicidal thoughts related to feelings of worthlessness, a belief that one is undeserving of life, or a sense that one is no longer able to cope with the pain of depressionTriggersDepressed mood triggered by thoughts or reminders of the deceasedDepressed mood not tied to specific thoughts or preoccupations

Differentiating Normal Bereavement from Major Depressive Episode

Grief and Major Depression—Controversy Over Changes in DSM-5 Diagnostic Criteria

MICHAEL G. KAVAN, PhD, and EUGENE J. BARONE, MD, Creighton University School of Medicine, Omaha, Nebraska

Am Fam Physician.

 2014 

Slide17

Adjustment disorder related to bereavement

A change in DSM-V is the proposed ‘adjustment disorder related to bereavement’.

The first diagnosis to recognise a form of grief as a psychiatric disorder, ‘a severe grief reaction that persists for at least 12 months after the death of a close relative or friend, in which the individual experiences intense yearning, emotional pain or preoccupation with the death on most days.’

May be accompanied by:

difficulty accepting the death,

anger over the loss,

a diminished sense of identity,

feeling that life is empty and

problems in engaging in new relationships or activities.

10–15% of bereaved people; over a million new cases of prolonged grief in the USA each year.

Most people report remission from the acute distress by 6–12 months following the death

Grief as a psychiatric disorder

Richard A. Bryant

The British Journal of Psychiatry Jul 2012, 201 (1) 9-10;

DOI:

10.1192/bjp.bp.111.102889

Slide18

Against grief and complicated grief being separate psychiatric conditions

human grief is a ubiquitous condition insofar as death and loss are part of being human; accordingly, the emotional pain that is felt following bereavement is perceived as understandable and should not be medicalised.

grief is managed differently across cultures and thus it is not possible for a single diagnostic system to dictate a uniform standard of grieving that applies to all cultures.

grief is unlike most other psychological responses in that it is closely interwoven into religious practices, and it is inappropriate for psychiatry to infringe on these rituals.

grief is adequately described by existing anxiety and depression reactions and there is no need to identify it as a distinct construct.

Grief as a psychiatric disorder

Richard A. Bryant

The British Journal of Psychiatry Jul 2012, 201 (1) 9-10;

DOI:

10.1192/bjp.bp.111.102889

Slide19

For grief and complicated grief being separate, psychiatric conditions

the core aspects of the grief response (e.g. yearning for the deceased) are distinct from anxiety and depression, and they contribute uniquely to the impairment suffered by these individuals.

Evidence that severe grief reactions do not abate over time and that people also experience marked psychological, social, health or occupational impairment; depression, suicidality, substance misuse, increased tobacco use, high blood pressure, elevated cancer rates, increased cardiovascular disorder.

prolonged grief with persistent yearning has been demonstrated across a wide range of cultures, including non-Western settings, as well as across the life span.

there are distinctive predictors, neural dysfunctions and cognitive patterns associated with prolonged grief.

whereas bereavement-related depression responds to antidepressant interventions, grief reactions do not.

treatments specifically targeted towards the core symptoms of prolonged grief are effective in alleviating the condition, and more effective than treatment that targets depression.

Grief as a psychiatric disorder

Richard A. Bryant

The British Journal of Psychiatry Jul 2012, 201 (1) 9-10;

DOI:

10.1192/bjp.bp.111.102889

Slide20

Bryant, Grief as a psychiatric disorder

‘The problem facing clinicians is that we lack the required data to justify any diagnostic demarcation between transient and persistent depression following bereavement.’

‘In contrast to depression, the proposal to describe prolonged grief reactions as those persisting after 12 months is based on a growing evidence base that minimises the risk of false positive diagnoses and permits identification of bereaved people who are experiencing marked impairment and can benefit from specific evidence-based treatment.

‘This new diagnosis implies neither that grief is ever ‘resolved’ (in the sense that the bereaved person no longer feels distress over the loss) nor that there is a uniform manner in which people manage grief. Instead, it identifies people who display persistent and impairing distress that can be eased with treatment.’

Grief as a psychiatric disorder

Richard A. Bryant

The British Journal of Psychiatry Jul 2012, 201 (1) 9-10;

DOI:

10.1192/bjp.bp.111.102889

Slide21

Complicated Grief; treatment from Mayo Clinic.

‘A highly individual process for each person, and determining when normal grief becomes complicated grief can be difficult. No current consensus about how much time must pass before complicated grief can be diagnosed.

‘Complicated grief;

intensity of grief has not decreased in the months after your loved one's death. (Some suggest after 12 months of intense, and debilitating symptoms). .

‘There are similarities between complicated grief and major depression, but also differences. They may co-exist.

Psychotherapy

‘Complicated grief therapy’ - similar to psychotherapy techniques used for depression and PTSD; individually or in a group format.

Learn about complicated grief and how it's treated

Explore such topics as grief reactions, complicated grief symptoms, adjusting to your loss and redefining your life goals

Hold imagined conversations with your loved one and retell the circumstances of the death to help you become less distressed by images and thoughts of your loved one

Explore and process thoughts and emotions

Improve coping skills

Reduce feelings of blame and guilt

Medications

‘Little evidence that psychiatric medications help. Antidepressants may be used in those with clinical depression as well as complicated grief.’

https://www.mayoclinic.org/diseases-conditions/complicated-grief/diagnosis-treatment/drc-20360389

Slide22

Enduring Grief; a study in complicated grief. With his wife, Pat Kavanagh for 32 years from 30 to 62. Her final illness was 37 days. ‘People say you’ll come out if it… and you do. But you don’t come out of it like a train out of a tunnel, bursting through the Downs in sunshine, you come out if as a gull comes out of an oil slick; tarred and feathered for life.’ P114 ‘Is Year Two better than One? Grief in the negative image of love; and if there can be accumulation of love over the years, then why not of grief?’ P89 ‘Every love story is a potential grief story.’ P67Julian Barnes Levels of Life 2014 London; Random House

Slide23

The phenomenology of grief; what’s missing and is its pain always aversive? ‘You ask yourself; to what extent in this turmoil of missing am I missing her, or missing the life we had together, or missing what it was in her that made me more myself, or missing simple companionship, or (not so simple) love, or all or any overlapping bits of each? You ask yourself what happiness there is in just the memory of happiness? And how might that work, given that happiness has only been shared. Solitary happiness…?’‘Nature is so exact, it hurts exactly as much as it is worth… so one relishes the pain… if it didn’t matter, it wouldn’t [hurt]. P71‘If the pain is not exactly relished, it no longer seems futile. Pain shows you have not forgotten; pain is proof of love.’ p113Julian Barnes, Levels of Life. 2014 London; Random House.

Slide24

Past or present? Bending time.‘initially you continue doing what you used to do with her, out of familiarity, love, the need for a pattern. Soon you realise the trap; caught between repeating what you did with her but without her, and so missing her; or doing new things, things you never did with her, and so missing her differently. You feel the loss of shared vocabulary.’ P88HL Mencken, 5 years a widower, ‘I still think of her every day and almost everyhour, always thinking of things to say to her.’I talk to her constantly… the paradox of grief: if I have survived four years of her absence, it is because I have had four years of her presence. P102.‘A friend said, ‘I resent the fact that she has become part of the past.’ She is in some intermediate tense, the past-present. P108Julian Barnes, Levels of Life. 2014 London; Random House.

Slide25

Craving love?

Enduring grief activates brain's reward center. O’Connor et al.

NeuroImage

, 2008, 42(2):969-72. DOI 10.1016/j.neuroimage.2008.04.256

Bereaved women (11 CG, 12 NCG) participated in an event-related fMRI scan, during grief elicitation with idiographic stimuli. Both CG and NCG participants showed pain-related neural activity in response to reminders of the deceased, only those with CG showed reward-related activity in the nucleus

accumbens

(NA).

This NA cluster was positively correlated with self-reported yearning, but not with time since death, participant age, or positive/negative affect. This study supports the hypothesis that attachment activates reward pathways. For those with CG, reminders of the deceased still activate neural reward activity, which may interfere with adapting to the loss in the present.

Slide26

Grief and Neurological Impairment

Loss of loved one is a singular event; neurological impairment can also be sudden in onset, e.g. stroke, SCI, or progressive, e.g. PD but is then always present. Have we a model for continuing ‘grief eliciting events’ rather than ‘temporally singular grief’?

Whereas most diseases affect the autonomic system of the body, e.g. heart, lungs, and guts, neurological impairment reduces, alters or prevents voluntary movement, and so expression and communication. It may have a more pervasive, encompassing effect of one’s being.

Some diseases are terminal, and so allow for anticipatory grief in patient and their loved ones, though there can be advantages in being able to say goodbye.

Slide27

Stroke

Second biggest cause of death in world.

UK; 152,000 per year

1 in 8 die within 30 days

1.4M survivors

Persistent symptoms;

arm weakness 77%, Leg weakness 71%, face weakness 54%, fatigue 24%

depression 33%

lack confidence 73%

can’t talk about their condition 44%

broken up with partners or considering it 44%

family treat differently 56%

Grief described in relation to stage theory

patient

carer/partner

children

https://www.stroke.org.uk/sites/default/files/stroke_statistics_2015.pdf

https://strokefoundation.org.au/blog/2015/05/19/grief-after-stroke

Slide28

Depression in Parkinson’s

30 - 40% experience depression and anxiety

Lack of dopamine, genetics…

Diagnosis stressful

Condition’s impact on every aspect of life and progressive.

Loneliness

May precede diagnosis

‘Parkinson’s disease is a progression of losses: physical, emotional, and lifestyle losses for the person with Parkinson’s as well for care-givers, family members, and other loved ones. It is natural to mourn these losses…’

https://www.parkinsons.org.uk/sites/default/files/publications/download/english/fs56_depressionandparkinsons.pdf

http://www.parkinsonsvic.org.au/images/site/publications/Fact_Sheets/Anxiety_and_Depression.pdf

Slide29

The present continuous, or present progressive tense

The present tense with a

continous

aspect, ‘Cook is cutting McGrath.’

‘For many people with Parkinson’s and those who are close to them, it often seems that no sooner do they adapt to one set of challenging circumstances than another arises to take its place. The ups and downs of the disease’s course and symptoms make it difficult to adjust and sometimes to know how to feel.

‘Unlike in other situations of loss, such as the death of a loved one, the losses of Parkinson’s seem to cascade endlessly.

‘Parkinson’s disease changes forever the lives of those who have it as well as the lives of loved ones. It is important to acknowledge grief and to accept that it is valid and appropriate to feel sadness and loss. For many people, part of the loss they are grieving is the communication, partnership, and intimacy they had before Parkinson’s.’

https://www.parkinsons.org.uk/sites/default/files/publications/download/english/fs56_depressionandparkinsons.pdf

http://www.parkinsonsvic.org.au/images/site/publications/Fact_Sheets/Anxiety_and_Depression.pdf

Slide30

Anticipatory grief among close relatives of patients with Parkinson’s Disease

Ulf

Erland

Johansson,

Agneta

Grimby

.

Grief self-reports of relatives of PD patients using Anticipatory Grief Scale (AGS) and questions about background variables. Results were compared with those from relatives of dementia patients in a former study also using the AGS. N = 44.

The study revealed feelings of missing and longing, inability to accept the terminal fact, preoccupation with the ill, tearfulness, sleeping problems, anger, loneliness, and a need to talk.

The PD and dementia groups appeared to show much more anticipatory grief similarities than dissimilarities.

Psychology and

Behavioral

Sciences 2014; 3(5): 179-184

doi

: 10.11648/j.pbs.20140305.15

Slide31

Measuring grief and loss after spinal cord injury: Development, validation and psychometric characteristics of the SCI-QOL Grief and Loss item bank and short form

Kalpakjian

CZ et al, J Spinal Cord Med, 2015, 38, 347-355

Can models of grief can be applied to SCI-related loss of physical capacity, social or occupational role function, and life goals?

Grief an abandoned concept in SCI rehabilitation. Without empirical support, psychologists moved towards the measurement of depression and post-traumatic stress disorder.

Growing evidence that pathological grief occurs in a significant minority of people

who sustain loss and is distinct from ‘normal’ grief, anxiety, and depression.

It can be associated with functional impairment, physiological changes, reduced quality of life, poor self-care, and elevated suicidal ideation and suicide attempts, after controlling for depression and anxiety. Key symptoms include yearning for what was, difficulty accepting the loss, emotional numbness, avoidance of reminders and confusion about one's role in life.

Slide32

Grief_14I spent a lot of time thinking about what I have lost since my injuryGrief_16I felt sad thinking about things I used to enjoyGrief_15Because of my injury, I felt like I lost many opportunitiesGrief_29I felt that I lost my former lifeGrief_10I had difficulty accepting my injuryGrief_7I longed for the life I had before my injuryGrief_2I missed out on life because of my injuryGrief_21I have lost spontaneity in my life.Grief_13Because of my injury, I was distressed about the abilities that I have lostGrief_30I was overwhelmed by everything that has happened to meGrief_28I missed the activities I used to doGrief_20Because of my injury, I had difficulty adjusting to the changes in my bodyGrief_11I felt that my injury has taken away my futureGrief_9I questioned why I was injuredGrief_6I felt lost because of my injuryGrief_1I felt I lost time because of my injuryGrief_24I felt that I am not who I used to be

Questions of Grief in SCI

Slide33

Robert Murphy, The Body Silent, 1987

Four most far reaching changes in the consciousness of the disabled are:

1. lowered self esteem

2. invasion and occupation of thought by physical deficits

3. anger

4. acquisition of a new, total undesirable, identity.

‘Disability is not simply a physical affair for us: it is our ontology, a condition of our being in the world.’

.

Slide34

‘a quadriplegic’s body can no longer speak a ‘silent language’... the thinking activity can no longer be dissolved into motion, and the mind can no longer be lost in an internal dialogue with physical movement… My thoughts and sense of being alive have been driven back into my brain…. consciousness of handicap even invades one’s dreams.

The totality of the impact of serious physical impairment on conscious thought... gives disability a far stronger purchase on one’s sense of who and what he is than do any social role... which can be manipulated. Each social role can be adjusted to the audience, each role played before a separate audience, allowing us to lead multiple lives. One cannot however shelve a disability or hide it... It is not a role: it is an identity... society will not let him forget it.’

Murphy, 1987

Slide35

Prolonged poor adjustment to SCI.

‘

You just cannot substitute for the experience of being able to use this wonderful piece of equipment, the body, be it running, riding or shagging. My greatest passion was horse riding. The sheer enjoyment and freedom of being able to go hell for leather across the forest on the back of this living being with communication and some measure of control, but not too much. It was awe-inspiring and wonderful and something that I cannot ever experience again. I enjoyed contact with a whole body experience; the sheer total involvement and the physical contact.

People say why not go to ‘Riding for the Disabled’. I don’t want to sit on a horse and be led round a fucking paddock. That’s nothing compared to what I was doing.’

Cole, 2004, Still Lives. Cambridge MA: MIT Press.

Slide36

Absence of Grief after SCI.

‘I was conscious for all of it, apart from the respiratory arrest. I was concerned with the practicalities, I suppose, of getting on with life. I didn’t lie there thinking all the time “Oh My God what have I done, what’s this going to mean?” I never burst into tears because, from the early stages of living with the injury, I have seen the whole thing as a challenge. How do I overcome so and so? How do I deal with this? How do I come to terms with that? I never thought, “I can’t do that”.

~ ~ ~

‘I was very fortunate right from the outset. I think in my own mind I take life very much as it comes. I had no cause for anger because it was a self inflicted accident. I never directed the anger towards myself. It was just “Fool”. Initially I did not feel any sense of loss. At the time I hoped that perhaps my arm might move or the finger might move or something. I was constantly re-evaluating my situation.

‘

Cole, 2004.

Slide37

Colette Duggan, et al, (

2016

) Resilience and Happiness After Spinal Cord Injury: A Qualitative Study.

Topics in Spinal Cord Injury Rehabilitation: Spring 2016, Vol. 22, No. 2, pp. 99-110.

Qualitative analyses were conducted of the written comments that were completed as part of a cross-sectional survey of individuals with SCI living in the community. 1,800 mailed, 475 returned.

Analyses identified both specific resources and cognitive perspectives that are associated with perceived happiness. Responses fell within 8 general categories: resilience, general outlook on life, social support and social relationships, religion or faith in a higher power, mood, physical health and functioning (including pain), social comparisons, and resources.

Conclusion:

A majority of respondents with SCI identified themselves as happy and explained their adjustment and resilience as related to personality, good social support, and a spiritual connection. In contrast, pain and physical challenges appeared to be associated with limited ability to bounce back.

Slide38

Depression in MND/ALS.

Depression is not easy to diagnose or differentiate from sadness and a recognition that many of life’s expectations can no longer be realized. Masked by the progression of the disease and physical changes, and exacerbated by communication difficulties.

Diagnosis and treatment of depression, if present, is likely to have a positive effect on ability to cope (MND Australia 2014). The prevalence of depression in ALS ranges from 0 to 44%, although systematic studies suggest 10% in advanced ALS.

Conclusion

There have been no controlled trials of treatment for depression in ALS.

Recommendation

There are insufficient data to support or refute specific treatments for depression in ALS.

Clinical context

There is consensus among experts that depression should be treated in patients with ALS; however, there are no controlled studies of benefit or harm.

http://www.mndcare.net.au/Living-with-MND/Wellbeing-and-support-needs/Psychosocial-and-spiritual-needs/Psychosocial-factors-and-mnd/Depression.aspx

Slide39

How do the behavioural symptoms of MND affect grief in family carers?

A research project led by Prof. Eneida

Mioshi

at the University of East Anglia.

50% of people with MND experience some behavioural symptoms, including apathy, disinhibition and rigidity, related to frontotemporal dementia (FTD).

This new project investigate if and how these effect anticipatory grief in their family.

If we can understand these processes, health professionals may be able to suggest coping mechanisms or therapy options with high risk families for optimal management. Furthermore, the study will also reveal key areas of family caregiver needs during bereavement that can be addressed with specific coping strategies or early interventions.

https://www.mndscotland.org.uk/research/research-we-fund/do-behavioural-symptoms-affect-family-carer-grief-in-mnd/

Slide40

The Impact of Anticipatory Grief on Caregiver Burden in Dementia Caregivers

Holley and Mast,

The Gerontologist

, Volume 49, Issue 3, 1 June 2009, Pages 388–396

.

‘anticipatory grief (AG) “the phenomenon encompassing the processes of mourning, coping, interaction, planning, and psychosocial reorganization stimulated and begun in response to the impending loss of a loved one (death) and in the recognition of associated losses in the past, present, and future.”

In a study of 94 caregivers, several common grief reactions were reported: loss of relationship (52%), changing communication with the care recipient (32%), loss of freedom (31%), and loss of future plans (30%;

Farran

, Keane-Hagerty,

Salloway

, &

Kupferer

, 1991).

Dementia caregivers, four grief-related themes emerged: the loss of social and recreational activities, loss of control over life events, loss of well-being, and loss of occupation, (Loos and

Bowd

, 1997). Sanders and Corley (2003) in 253 dementia caregivers; 68% reported grief; feelings of ambiguity about their relationship, loss of previously established roles and intimacy, and loss of control.

So, is grief for the dementia patient or their carer’s present and future?

‘Anticipatory grief is a very difficult process, exacerbated by the fact that we lack norms and expectations for how to act when a loved one is dying. This may be even more ambiguous in dementia with the changes in cognitive, physical, and personality factors and the fact that family members often have difficulty viewing dementia as a terminal illness.’

Slide41

Loss of sight.

Jeremy

;

sightless at 21.

Initially strong, remembered faces, Charles Bonnet roller coaster.

gave new people faces of people he remembered like them…

images in past, when he had to move on, and visual imagery faded.

‘The lucky ones were blind from birth.’

John Hull

,

sightless in his 40’s.

People he had met before going blind had faces he remembered, those after did not.

‘To what extend is a loss of the image of the face connected to a loss of image of the self? The horror of being faceless and of not expressing myself – I could feel myself stopping smiling.’

In the voice, but a different range of emotions revealed and the transition took years for both.

Cole, About Face, 1998.

Slide42

John Hull.‘For a long time I was deeply grieved over the lack of erotic excitement through the female face. I've never talked to anyone about this before because it’s never occurred to me, but I do believe that I have been quite successful in re-establishing it. Its range is very limited, and it is significant that I have spoken about the face of a child and the face of a woman. It took me a long time to transfer pleasure from visual to the tactile. It is such a laborious ill-defined reconstruction, but I think that is what it is. The pleasure is from their face, not from their head.’

John Hull, 1935 – 2015

Slide43

Being old.

 

Two diagnostic systems for the diagnosis of Complicated Grief [Horowitz, et al, American Journal of Psychiatry 154, 904-910;

Prigerson

, et al,

1999.

Brit J Psychiatry 174, 67-73].

 

In a sample of elderly persons, features of bereavement, diagnoses of Complicated Grief and related symptoms were assessed according to two criteria.

18.9% of the sample had experienced a major bereavement, in average 15 years before measurement. The prevalence rates were 4.2% (Horowitz et al.) and 0.9% (

Prigerson

et al). The agreement was poor (kappa=.13), i.e. the minority of cases received both diagnoses. The probabilities of developing CG after experiencing a major bereavement were 22.2% (Horowitz et al.) and 4.6% (

Prigerson

et al.).

Forstmeier

S and

Maercker

A. J Affect

Disord

. 2007 Apr;99(1-3):203-11.

Comparison of two diagnostic systems for Complicated Grief.

Slide44

Ages of being, ages of vulnerability…

Childhood initial acceptance in family and friends

difference emerges in friends and self

Adolescence appearance matters and demarcates

Young adult watching peers pair off and breed

Adulthood parents to care for and lose

Older age physical impairments more invasive, losing family and friends.

Slide45

Conclusions

Past, present and future tenses of grief

Slide46

Conclusions

Past, present and future tenses of grief

Grief and depression?

separate for past event, less easily separated in continuing loss?

.

Slide47

Conclusions

Past, present and future tenses of grief

Grief and depression?

separate for past event, less easily separated in continuing loss?

Grief and complicated grief. ‘Grief changes shape, but never ends.’

Slide48

Conclusions

Past, present and future tenses of grief

Grief and depression?

separate for past event, less easily separated in continuing loss?

Grief and complicated grief. ‘Grief changes shape, but never ends.’ Keanu Reeves, Guardian, November 2019.

Slide49

Conclusions

Past, present and future tenses of grief

Grief and depression?

separate for past event, less easily separated in continuing loss?

Grief and complicated grief. ‘Grief changes shape, but never ends.’ Keanu Reeves, Guardian, November 2019.

The phenomenology of grief seems poorly explored in impairment.

Is grief is about (past) loss, e.g. in SCI. But what of the daily consequences of impairment? Coming to terms with loss may be different to coming to terms with altered state? Is Grief only about a loss or an absence; might it also include unwanted presence?

Slide50

Conclusions

Past, present and future tenses of grief

Grief and depression?

separate for past event, less easily separated in continuing loss?

Grief and complicated grief. ‘Grief changes shape, but never ends.’ Keanu Reeves, Guardian, November 2019.

The phenomenology of grief seems poorly explored in impairment.

Is grief is about (past) loss, e.g. in SCI. But what of the daily consequences of impairment? Coming to terms with loss may be different to coming to terms with altered state? Is Grief only about a loss or an absence; might it also include unwanted presence?

Grief in care-givers – each impairment affects five others …

Slide51

Conclusions

Past, present and future tenses of grief

Grief and depression?

separate for past event, less easily separated in continuing loss?

Grief and complicated grief. ‘Grief changes shape, but never ends.’ Keanu Reeves, Guardian, November 2019.

The phenomenology of grief seems poorly explored in impairment.

Is grief is about (past) loss, e.g. in SCI. But what of the daily consequences of impairment? Coming to terms with loss may be different to coming to terms with altered state? Is Grief only about a loss or an absence; might it also include unwanted presence?

Grief in care-givers – each impairment affects five others …

Resilience; why do some grieve more than others? And how do we assist those with

prolonged grief?