February 22, 2017

resources for carers - information to help with the most difficult decision...

Letting go without giving up : continuing to care for the person with dementia

The idea for Letting go without giving up grew from concerns expressed by carers who felt they were no longer allowed to have a role in caring for the person they had looked after at home after the person entered long-stay care. This booklet is aimed at carers who want to continue their involvement in the lives of the people they have cared for, even if they are no longer responsible for their day-to-day physical care needs.

Most difficult decision: dementia and the move into residential aged care : Discussion paper 5 October 2012

Adjustment to residential care is more than just a discrete event.  It begins well before placement actually occurs and continues beyond.  While policy direction and the wishes of the person with dementia and their carer can dictate that people with dementia may stay living at home for as long as possible, the impacts of the symptoms and behaviours of dementia mean that ultimately a large number of people with dementia will move into residential aged care.
A pro-active approach to minimise the negative outcomes associated with moving into residential care should include:
• improved quality and timeliness of information about moving to a RACF
• psychosocial support to negate the impact of emotional stress
• the adoption of a staged approach to ‘sharing the care’ through easier access to carer respite in a RACF
In addition, carers felt that other aspects which would improve the experience of moving and settling in to a new environment include:
• staff skilled in delivery of quality dementia care
• a higher staff to resident ratio
• provision of meaningful, inclusive activities which interest the person with dementia
• a warm and welcoming environment that is characterised as ‘home like’
• strong leadership and management skills to promote quality dementia care before, during and after the placement of the person with dementia into residential care.

The family guide to Alzheimer's disease : transitions DVD 
In this final volume, you’ll learn how to make some difficult transitions. You’ll learn how to adapt social activities to accommodate your loved one’s increasing disability and isolation. You’ll also learn how to recognize when the time has come to consider moving your loved one to a care facility (and how to evaluate these facilities). You’ll learn how the disease affects a person’s spirituality, and you’ll gain insights from others who have gone through the process of grieving the loss of a loved one for whom they have provided years of care.

Stages of senior care : your step-by-step guide to making the best decisions

Using their experience running a successful international company providing in-home, non-medical services for seniors, husband-and-wife founders of Home Instead Senior Care offer a helpful guide for families choosing among home care-giving and other assisted-living options for aging or ailing parents. The Hogans believe in helping seniors stay in their homes as long as possible, and knowledge is their most powerful tool in securing that goal; this well-researched volume is packed with information, advice and resources aimed at managing and ameliorating the sadness, confusion, guilt and anxiety of making quality-of-life decisions for a loved one. Emphasizing the need for planning, the Hogans offer a list of signs that indicate it’s time to consider additional care, as well as a thorough exploration of the options, including pros and cons, questions to ask and other factors when choosing among home care, senior centers, assisted living and nursing homes. The Hogans also consider options for children who live far away from their parents, and advice on what to do when siblings find themselves in disagreement. Recognizing that there is no one-size-fits-all solution, this salient volume compassionately addresses a full range of hard-to-discuss subjects, including funeral services and bereavement.

Transitions in care of people with dementia : a systematic review

This systematic review assesses the evidence on the pathways people with dementia take into and through the health and aged care system, and the implications of these transitions for the quality of life of people with dementia and their families and carers. The review focuses on four distinct areas: predictors of care transition, description of care pathways, intervention to modify care pathways, and pathways taken by special population groups such as Aboriginal and Torres Strait Islander peoples.

Quality of Residential Aged Care: The consumer perspective A REPORT FOR ALZHEIMER'S AUSTRALIA

... home care packages alone can not provide the level of care required by people with complex care needs, such as those in the later stages of dementia or without an informal carer. 

Many people will still require residential aged care services and we need to ensure these services are able to provide the highest quality of care. 

These people are among the most vulnerable in our community, with many of them having cognitive impairment, physical disability and limited connection to the outside community. 

The majority of residents receive good quality care. There are thousands of dedicated nurses and care staff, who take great pride in their work, and go above and beyond the minimum care required. 

Many residents benefit from being in residential care and find the opportunities for interaction with other residents and staff to be beneficial.

 Unfortunately, there are still too many cases where the basic human rights of people have been violated within residential care. Since becoming President of Alzheimer’s Australia many consumers have shared disturbing stories with me of physical, psychological and sexual abuse, inappropriate use of restraint, unreported assaults and people in extreme pain at end of life not having access to palliative care. This paper is written for the courageous people who have told their stories. It provides strategies as to how we can begin to address the systemic issues in the aged care system that are leading to breakdowns in care. The objective is to bring providers, staff and consumers together to determine the way ahead. It also draws on international examples of initiatives where consumers play a key role in monitoring quality and determining accreditation of services. We have a common commitment to make the aged care system in Australia as good as we can. We must have a zero tolerance policy for poor quality care. 

Ita Buttrose AO, OBE 

No comments: