The meaning of dependence and independence of older people with a disability in Ireland

The paper presents the findings of a research study carried out in Ireland in 2006 (Murphy et al., 2007) which explored the meaning of dependence and independence for older people with a disability. The research adopted a grounded theory approach; purposive sampling was used initially with some relational sampling towards the latter interviews. The sample was comprised of 143 older people with one of six disabilities: stroke (n=20), arthritis (20), depression (20), sensory disability (20), a learning disability (24), and dementia (18). All participants lived at home, some participants required high levels of help in activities of living while others were mostly independent. An interview schedule was used to guide interviews, all of which were tape recorded and transcribed. Data was collected on levels of dependence and independence using the Katz scale. Participants recorded high levels of independence in relation to transferring (93%), toileting (92%), dressing (87%), continence (87%) and feeding (98%). The main area of dependence where participants required assistance from others was with bathing (77%). The constant comparative technique was used to analyze qualitative data. The findings of the study would suggest that participants personal definition of their independence or dependence shifted relative to others and/or improvement or worsening of their capacity People were aware of the difference between independence and dependence, but these two concepts were not always perceived as opposites. It was possible to be independent and dependent at the same time. People valued being able to do things for themselves, accepted help when necessary but wanted to reciprocate when possible. Participants used varied coping strategies to regain and retain control of their lives. Strategies to promote older peoples independence and self esteem will be explored in this paper.

Direct Payments Policy and Practice Review Report (PDF 243 KB)

Direct Payments are cash payments made in lieu of social service provisions, to individuals who have been assessed as needing services. Direct Payments increase choice and promote independence. They provide for a more flexible response than may otherwise be possible for the service user and carer. They allow individuals to decide when and in what form services are provided and who provides them, who comes into their home and who becomes involved in very personal aspects of their lives. Direct Payments put real power into the hands of service users and carers, and allow them to take control over their lives. Access to Direct Payments as a means of delivering social services in Northern Ireland has been available since 1996 under the Personal Social Services (Direct Payments) (Northern Ireland) Order 1996. Since then take up of Direct Payments has been limited in number with the majority being accessed in the physical disability programme. åÊ

National Carers' Strategy

A key objective of Government policy for older people, children and adults with an illness or a disability is to support them to live in dignity and independence in their own homes and communities for as long as possible. Carers are vital to the achievement of this objective and are considered a backbone of care provision in Ireland. Click here to download PDF 1.8mb

Neurological conditions: involvement to improve service delivery

A major, ongoing Public Health Agency led consultation exercise has identified 12 recommendations to improve the lives of the 48,000 people, and their carers, who experience neurological conditions across Northern Ireland. These recommendations will form the basis of an action plan to improve service delivery and support for those experiencing a range of conditions, such as epilepsy, Huntington's Disease, Parkinson's Disease, progressive supranuclear palsy (PSP) and multiple sclerosis (MS).The recommendations cover four areas:accurate information and diagnosis;control and choice, particularly self-management and person-centred services;day-to-day living and independence, including finance, employment, social life and ability to get out and about;emotional and psychological impact on individuals and families, eg the support available to deal with stress, fear, frustration, isolation, loss and vulnerability associated with living with a neurological condition.The report was launched at a regional workshop, held in Cookstown (today) and co-ordinated through the Neurological Conditions Network, which was established to develop this work.Speaking before the workshop, Health Minister Edwin Poots said: "Neurological conditions give rise to complex needs, which require support from a wide range of professionals. They also change lives, both for those directly affected and for their families and carers, and it is so important not to lose sight of this if we are to successfully address the challenges in tackling neurological conditions."Last week, I visited the home of Beth McCune, who suffers from motor neurone disease. I was invited to see for myself the daily challenges faced by Beth and her husband and carer, Arthur, and to hear of their experiences. While I was struck by their courage and patience, this visit underlined again for me the severe life-changing impact of the disease."At present, there are some 48,000 people in Northern Ireland living with neurological conditions. It was in recognition of the needs of men and women like Beth that my department requested the establishment of the Neurological Conditions Network and provided the necessary funding to support it."Michelle Tennyson, PHA Assistant Director and Chair of the Neurological Conditions Network, said: "This detailed engagement exercise was undertaken to get the views and quality of life experiences of those affected by these conditions. We tried to ensure everyone who wanted to contribute could, by providing support through helplines, the internet and face-to-face events. I am honoured that so many people have trusted us with their experiences to help us make a difference and was privileged to be invited into the home of Beth and Arthur McCune for the same reason."The recommendations cover a range of conditions and their implementation will need cooperation and action from professionals, service users, voluntary organizations and others, across many sectors and agencies. The network is looking forward to delivering on these challenging new ways of working to improve the lives of all those affected by neurological conditions."The workshop attracted service users and carers along with delegates from across Northern Ireland's community, voluntary and statutory sectors.If you have a neurological condition, or care for someone who does, and want to share your experiences, please go to: www.publichealth.hscni.net/ncnsurveyYou can also contact Julie Mawhinney, Tel: 028 9032 1313.

World Alzheimer Report 2011 - The benefits of early diagnosis and intervention

Alzheimer's Disease International released the World Alzheimer Report 2011 - The benefits of early diagnosis and intervention on the 13th September 2011. Key Findings:As many as three-quarters of the estimated 36 million people worldwide living with dementia have not been diagnosed and hence cannot benefit from treatment, information and care. In high-income countries, only 20-50% of dementia cases are recognized and documented in primary care. In low- and middle-income countries, this proportion could be as low as 10%.Failure to diagnose often results from the false belief that dementia is a normal part of aging, and that nothing can be done to help. On the contrary, the new report finds that interventions can make a difference, even in the early stages of the illness.Drugs and psychological interventions for people with early-stage dementia can improve cognition, independence, and quality of life. Support and counseling for caregivers can improve mood, reduce strain and delay institutionalization of people with dementia.Governments, concerned about the rising costs of long-term care linked to dementia, should “spend now to save later.” Based on a review of economic analyses, the report estimates that earlier diagnosis could yield net savings of up to US$10,000 per patient in high-income countries.��World Alzheimer Report 2011 - Executive Summary (PDF, 36 pages, 1128KB)World Alzheimer Report 2011 (PDF, 72 pages, 1710KB)����

Neurological Conditions Network - Engagement exercise summary report

This is the summary report of the Speak out for Change engagement exercise carried out by the Neurological Conditions Network. This engagement undertook to ask people's experiences of living with a neurological condition and caring for someone with a neurological condition. Across the wide range of conditions represented,� the 142 patient experiences gathered to date, have consistently revealed issues around information, choice and control, independence and the emotional impact of neurological conditions.