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DEMENTIA Impact on Spousal Care giving A Study Johnny O’ Hagan BSc CQSW MSc Mental Health Practice AMHP.

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Presentation on theme: "DEMENTIA Impact on Spousal Care giving A Study Johnny O’ Hagan BSc CQSW MSc Mental Health Practice AMHP."— Presentation transcript:

1 DEMENTIA Impact on Spousal Care giving A Study Johnny O’ Hagan BSc CQSW MSc Mental Health Practice AMHP

2 Context The study examined the health and psycho-social consequences of spousal care giving (SC) Highlighted some of the research findings in a global, national and local context Commented on practice implications The dementia SC literature was examined and summarised

3 Key Issues- Study found adverse health impacts of long term care giving on spouse Spouses care for longer periods(0-12 years) compared to other caregivers More likely to suffer from stress and other associated mental health disorders e.g. (depression)

4 Key Objectives To focus on the impact of spousal care giving Policy developments and service delivery mechanisms (local national global perspectives) Appraise through a research based approach the key clinical and socio economic factors affecting the older spousal care giver

5 Background Public awareness of dementia is currently high Some studies such as (Burns & Liffe 2009) estimate that dementia affects 700,000 people in the UK at a cost of £17bn per annum Heart disease (£4bn) stroke (£3bn) cancer (£2bn)

6 Background cont- Globally estimated that 12 million people suffer from dementia-likely to increase to 25 million by 2040 (Alzheimer's Society 2007) Primary burden of support falls on one person normally the spouse see ( Grad & Sainsbury,1965.) & (Gilliard,1983) Various studies – claim that the numbers of people with dementia is substantial (Harvey 1998) who demonstrated this from an epidemiological perspective

7 continued Not just the predicted growth that is important- it is the world wide challenge to carers health and social care agencies & Governments to meet their complex needs (Cantley 2001) This complexity means that dementia care involves many different combinations of carers and services. It is this dynamic and the impact on carers that the study primarily concerned itself with

8 Defining dementia Over the past 20 years definitions have become more precise about the illness it prevalence and its clinical features Deterioration in intellectual performance from a previous level- accompanied by significant decline in personal and social function will be present (Canley 2001) Different types of dementia subtypes can now be recognised by their mode of onset presence of particular psychiatric or neurological features and the course of the illness ICD-10-1992 & DSM IV -1994 most commonly used criteria for diagnosis in the UK Lewy Bodies (5%) Alzheimer’s(50-75%) Vascular Dementia (20 %) (Frontotermporal 5/10%) Alzheimer's Disease International World Report 2009.

9 Spousal care giving- findings Cited in many studies- (Gilliard 2001;Adams Mc Clendon, Smith 2008) identified how people with dementia and their spousal caregivers perceived their mutual engagement in everyday activities Critical area because dementia causes severe limitations in a persons ability to perform adl’s.

10 Findings continued Deterioration of cognitive functioning, motor skills and social interactional abilities leads to a need for spousal support 24/7 in some cases. People with dementia avoid engaging in everyday activities outside the home for fear of failure. (Farran 2003) Most common person to support dementia suffer is a co-habiting spouse.( Spencer 2001.) They experience increased mental and physical burdens due to the challenges they face

11 Findings continued Burden leads to physical and psychological decline in the care giver characterised by: Stress anger guilt psychosomatic physical illness Studies showed that carers tended to plan watch over and secure safety for their partners causing them fear& anxiety ( disorientation time and place fear of falling) Key objective for carers was the preservation of the integrity of the personality of their loved one some carers described dementia as a living bereavement (Ziff&Shafner,2000)

12 Caregiver distress Investigated by many researchers – in USA estimated that 5/15% of the population is affected by dementia (Davis 1997) Most of these people depended on spousal caregivers for practical emotional and physical support –can have a positive as well as negative impact on spousal health and well being Has a profound impact on the attachment bond the key correlation relationship between care giving and distress is important for a number of reasons

13 cont Major study (Markiewicz 1997) examined secure anxious and ambivalent avoidant styles of attachment found that: Ambivalent = more negative emotional responses fewer supports. Secure = more positive response to care giving role

14 Older husbands Role overload was connected to psychological distress and intention to end home care giving Likelihood of ceasing home care giving- increased when husband reported high relational deprivation e.g. loss of intimacy conversation going out together (Ducharme 2007) Life expectancy is increasing so many husbands will find themselves caring for longer periods Adverse changes in health reported –practical issues such as difficulties in household responsibilities can lead to distress because their wives can no longer interact with them or support them

15 Summary Clear that male care givers are vulnerable to stress, burden, depression, social isolation anger /guilt financial burden Emotional trauma linked to relational deprivation Physical illness-more difficult to recover from viral infections and at times violent reaction related to their changing role from husband to carer( cared for wives can also display violent characteristics)

16 Older wives Numerical dominance reported Role described in terms of nurturance personal care tasks household tasks/ activities highlighting care giving as a gender linked experience. (Miller& Kaufman1996 Studies of gender difference note different patterns of male/ female enactment

17 cont Wife spouses provide care for longer periods May have a leading protective deterrent avoiding institutionalisation- unwilling to consider institutionalisation Extensive research indicates negative health and psychological consequences for women e.g. depression stress grief anger and higher levels of burden Decreased attention to their own health and well being also reported Negative bonding issues were particularly prevalent in late life and second marriages leading to ambivalence (no time to cover this interesting area)

18 cont Women spouses provide the majority of unpaid care (Stone 1987) Frequently the care givers are older people with one or more chronic health conditions Wives have reported being angry aggressive towards husband because of stress For many wives the diagnosis of dementia is a significant turning point in the life of the couple Being cared for by a wife has a leading protective deterrent against decision to institutionalise

19 Study discussion (summary of findings) Providing full time care-care giver encountered a heightened risk to their own physical / psychiatric health and well being. Dementia care giving more than other types tremendously burdens the physical/ psychological social and financial world of the care giver Spousal care giving is commonplace lasting (0-12 years) Overarching hypothesis-spousal care givers are expected to perform complex caring tasks similar to those being carried out by paid social services and health providers Often at great cost to their own health and well being- but of great benefit to husband/ wife and the state as it reduces the economic burden to governments

20 conclusion This hypothesis is argued very strongly and coherently in two major studies / consultations National Dementia Strategy Consultation DoH (2008) Audit Commission Forget me Not Audit (2002-2003) Practice implications- developing a comprehensive service is outlined in these documents- key theme is the early identification of the illness leading to early intervention needing a pro active multi- lateral approach. Joint national& local planning commissioning and delivery of services is critical to ensuring best use of resources / and best outcomes for sufferer’s and their carers

21 conclusion If this remains unachievable objective- will result in continued health inequalities for these people And to a prolonged absorption for spousal care givers of the proven stress factors associated with their care giving Negative impact this has on their own health and well being. The predicted increase in prevalence rates of the disease will further exacerbate this complex dynamic. Reminder that it is clearly visible throughout the research how important the role of the carer is to our society and to their loved ones-imagine what would happen without their contribution.

22 References Adams,K.B.,Mc Clendon M.K.J.,& Smith,K.A(2008) Personal Losses and Relationship Quality in Dementia Care Giving:Journal of Dementia:7 (3) 301-309. Alzheimer’s Society U.K. The Full Report (2007) Burns,A & Liffe.S. Alzheimer’s Disease.BMJ 2009: 338,B158. Cantley, C. (2001) A Handbook of Dementia Care. Open University Press. Grad& Sainsbury (1965) An evaluation of the effects of caring for the aged at home. In psychiatric disorders in the aged.WPA symposium.Manchester.Geigy

23 References Farran (1999) Finding Meaning Through Care giving: Development of an Instrument for Family Caregivers. Journal of Clinical Psychology: Vol.55 issue 9.1107-1125 Gilliard, C.J., (1984) Living with Dementia : Community Care of the Elderly Mentally Infirm: London. Croom Helm. Gilliard,C.J, (1984) “Emotional Distress Amongst the Elderly Infirm”, British Journal of Psychiatry,145,172-177. Gilliard, C.J. In Handbook of Dementia Care (2001). The perspectives of people with dementia their carers and families. Open University Press. 77-89

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