AND DEMENTIA Palliative Care

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palliativecare org au,Tel 02 6232 0700,Deborah Parker RN BA MSocSc PhD. Professor of Nursing Dementia Aged Care,Faculty of Health University of Technology Sydney. Joanne Lewis RN MPallC PhD,Director of Studies Faculty of Health. University of Technology Sydney,Kelly Gourlay National Policy Advisor. Palliative Care Australia Incorporated,Dementia Australia s Dementia Advisory.
Dementia Australia 2017,ISBN 978 1 921570 30 8,Introduction 2. Background 3,Philosophy of care 4,Prognosis 5,Phases of dementia 5. Care settings 7,Advance care planning 10,Care planning 11. Symptom management 12,Dyspnoea 13,Nutrition and hydration 14. Delirium 14,Personal comfort measures 16,Mouth care 16.
Personal care and bathing 16,Bowel care 17,Spiritual care 18. Supporting people who are culturally and linguistically diverse 20. Supporting Aboriginal and Torres Strait Islander people 21. Supporting lesbian gay bisexual transgender and intersex people 22. Family carers 23,Terminal care recognising dying 24. Grief and bereavement support 25,Conclusion 26,References 27. Glossary 30,Palliative care and dementia 1,Introduction. Australia like many developed countries has an ageing eight years prior to their death Three quarters of this. population The proportion of older people aged 65 and group used an aged care service during the 12 months. above has tripled over the last fifty years to 3 4 million in before they died 3 This suggests that aged care services. 2014 Furthermore projections suggest there will be 9 6 are an important partner in the provision of end of life. million people aged 65 and over and 1 9 million people care for older Australians particularly for those living with. aged 85 and over by 2064 1 dementia, Current estimates indicate that there are 413 106 people.
with dementia in Australia Prevalence is projected to. increase to 536 164 by 2025 and to more than,1 100 890 by 2056 2. Today most people with dementia who live in the, community receive informal care 46 Only 29 receive. both formal and informal care 16 receive formal care. only and 9 receive no care 2, Around 80 of Australians who died between 2010 and. 2011 aged 65 or over used aged care services in the. 2 Palliative care and dementia,Background, Dementia describes a collection of symptoms that are and internationally dementia is now recognised as a. caused by disorders affecting the brain The condition is terminal condition for which palliative and end of life care. fatal There is a typical pattern of increasing symptoms for is appropriate 4. the person living with dementia These symptoms can. impact a person s ability to recognise people places and This discussion paper provides guidance for health. events communicate eat get dressed walk and move professionals on palliative and end of life care for people. about independently control their bladder and bowel with dementia and those who support them. and swallow food and fluids Supports for the person living. with dementia will vary over time and can be impacted by. co occurring health conditions, Dementia is now the leading cause of death for women in.
Australia and the second leading cause overall, accounting for 8 of all deaths This has increased from. 4 in 2005 In real figures this equates to 37 Australians. dying each day from dementia However this rate, underestimates the much larger proportion of people who. die from other causes and have dementia 2 In Australia. Palliative care and dementia 3,Philosophy of Care, DEMENTIA person and where quality of life is the primary goal 10 A. palliative approach is consistent with the philosophy of. Support for people living with dementia and their families person centred care and the. has been influenced by a range of initiatives designed to VIPs model. put the person first The most influential is the concept of. person centred care first conceived by Tom Kitwood 5 In In Australia there are some specific terms that need. this model a person has absolute value and is worthy of clarification. respect regardless of disability End of life is the period when the person is living with. and impaired by a fatal condition even if the trajectory. Brooker building on Kitwood uses the acronym VIPS, is ambiguous or unknown People are approaching the. to identify that people with dementia and their families. end of life when they are likely to die within the next. should be valued people with dementia must be treated. 12 months 9,as individuals the perspective of the person with.
dementia must inform our understanding and the Specialist palliative care is a subset of palliative care. person s social environment must be attended to provided by clinicians who have advanced training in. palliative care The role of the specialist palliative care. The concept of person centred care is embedded in service includes providing direct care to patients with. aged care standards in Australia and has been widely complex palliative care needs and providing consultation. influential in changing the culture in aged care services services to support advise and educate non specialist. including for those without dementia Most recently the clinicians who are providing palliative care 9. Dignity in Care initiative focused on reinforcing the. importance of treating patients with dignity and respect This discussion paper recognises the importance of. across care settings 7 everyone involved in the care and support of people living. with dementia,PALLIATIVE CARE, Palliative care is care that helps people live their life as. fully and as comfortably as possible when living with a. life limiting or terminal illness Palliative care is an. approach that improves the quality of life of patients and. their families facing the challenges associated with before. terminal condition illness Quality of life is improved. through prevention and relief of suffering by means of. early identification and impeccable assessment and. treatment of pain and other problems including physical. psychosocial and spiritual 8, Palliative care is for people of any age who have a serious. illness that cannot be cured Dying is a normal process. with palliative care offering a support system to help. people to live their life as fully and as comfortably as. possible until death and to help families cope during this. illness and in their bereavement 9, While palliative care has traditionally been an approach. associated globally with people with cancer there is. support for expanding palliative care early in the course. of chronic conditions including for people with dementia. The term palliative approach refers to care provided. by any healthcare professional that adapts palliative care. knowledge and expertise to meet the needs of people. with chronic life limiting conditions, A palliative approach recognises the importance of. patient and family centred care that focuses on the. 4 Palliative care and dementia, A question that health professionals may be asked by Phases of dementia.
either a person with dementia or their family is around. prognosis How long have I they got EARLY DEMENTIA, This question is difficult to answer While dementia is a Often this phase is only apparent in hindsight At the time. terminal condition the need for a palliative approach it may be missed or put down to ageing or overwork. palliative care end of life or specialist palliative care will The onset of dementia is usually very gradual and it is. vary with each individual mainly because of co existing often impossible to identify the exact time it began The. health conditions person may,Appear more apathetic and to have less sparkle. Diagnosis of dementia can occur some years after the. onset of symptoms Average survival times range from Lose interest in hobbies and activities. three to ten years and differ depending on whether they Be unwilling to try new things. are calculated from diagnosis or the onset of symptoms Show reduced capacity to adapt to change. Factors such as age sex other co existing conditions Show poor judgement and make poor decisions. type of dementia and severity at diagnosis have been. Be slower to grasp complex ideas and take longer with. found to influence reported survival,routine jobs, While survival time is similar for men and women women Blame others for stealing lost items. due to their longer life expectancy lose more years of Become more self centred and less concerned with. their remaining life span then men Age at diagnosis has others and their feelings. a negative impact as does severity of dementia with. Become more forgetful of details of recent events, survival for those with mild dementia ranging from 2 9 to. 7 years moderate 1 5 to 3 years and severe 1 4 to Be more likely to repeat themselves or lose the thread. 2 4 years 11 of their conversation, Be more irritable or upset if they fail at something.
Survival time for people living with younger onset Have challenges handling money 14. dementia is longer than for people who are aged 65 and. over For younger onset dementia this varies from 1 3 A person with early dementia may require a. years to 7 9 years after diagnosis and from 6 1 to 14 7 palliative approach palliative care or end of life care if. years after disease onset Time from symptom onset to other conditions indicate this is required. institutionalisation is also longer for people living with. younger onset dementia 9 years compared to 4 years for MODERATE DEMENTIA. those aged 65 and over 12 At this stage the challenges are more pronounced and. disabling The person may, While symptoms will vary individually a systematic review. of prognostic indicators of 6 month mortality for people Be more forgetful of recent events Memory for the. with advanced dementia13 found that decreased appetite distant past generally seems better but some details. insufficient food intake malnutrition weight loss and may be forgotten or confused. anorexia were common prognosticators identified across Be confused regarding time and place. studies Other indicators were increased risk as Become lost if away from familiar surroundings. measured by a valid and reliable dementia severity scale Forget names of family or friends or confuse one family. such as the Functional Assessment Staging Tool FAST member with another. and presence of co morbidities,Forget saucepans and kettles on the stove or may. Currently there is no single prognostication tool for leave gas unlit. accurately predicting the need for palliative or end of life Wander around streets perhaps at night sometimes. care Understanding the three phases of dementia becoming lost. early moderate and advanced taken with a Behave in a disinhibited way for example going. comprehensive clinical assessment may provide outdoors in nightwear. guidance of appropriateness of palliative or end of life. See or hear things that are not there, care or referral to specialist palliative care services. Become very repetitive,Be forgetful of hygiene or eating and drinking. Palliative care and dementia 5, Become angry upset or distressed through Fail to recognise everyday objects.
frustration 14 Be disturbed at night, A person with moderate dementia may require a palliative Be restless perhaps looking for a long dead relative. approach palliative care or end of life if other conditions Be aggressive especially when feeling threatened or. indicate this is required closed in, Have difficulty walking perhaps eventually becoming. ADVANCED DEMENTIA confined to a wheelchair, At this third and final stage the person is severely Have uncontrolled movements. disabled and needs total care The person may Have permanent immobility and in the final weeks or. Be unable to remember occurrences for even a few months 14. minutes for instance forgetting that they have just had. a meal A palliative approach palliative care and end of life. care is appropriate for a person with advanced dementia. Lose their ability to understand or use speech, Referral to specialist palliative care services may be. Be incontinent required,Show no recognition of friends and family.
Need help with eating washing bathing toileting and. 6 Palliative care and dementia,Care settings, A person with dementia may receive care across different services depending on referral criteria and service. settings and should not be excluded from any health care availability. services because of their diagnosis regardless of age. Health professionals vary on their level of knowledge and RESPITE SERVICES. expertise in providing care for people with dementia. Respite is a form of support for all people living at home. A range of government initiatives The Palliative Approach who have dementia and their families and carers Our. Toolkit PalliAged Program of Experience in the Palliative position is that respite is of benefit to both the person. Care Approach Improving Dementia End of life Care at with dementia and the carer For the person living with. Local Aged Care have been developed to support aged dementia respite can be an opportunity to enjoy. care services to provide palliative and end of life care and relationships and meaningful activities separate from their. access to specialist palliative care support More family or carer and can be within their own home or. with dementia in Australia Prevalence is projected to increase to 536 164 by 2025 and to more than 1 100 890 by 2056 2 Today most people with dementia who live in the community receive informal care 46 Only 29 receive both formal and informal care 16 receive formal care only and 9 receive no care 2 Around 80 of Australians who died between 2010 and 2011 aged 65 or over used aged

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