Dec 10, 2015

Does My Disease Define My Right To Access The Services I Need?

Dementia and Alzheimer’s disease are now the second leading cause of death for Australian’s, behind, coronary heart disease.

There are 110,000 dementia related deaths reported annually, and the incidence of the disease continues to grow with current figures estimated at over 300,000 people, and by 2020 and 2050 it is anticipated there will be 400,000 and 900,000 respectively.

Chronic disease such as dementia are one of the most significant problems faced by modern public health. Whilst there have been advances in the management of heart disease, improved treatments for many cancers and other major causes of death, dementia remains at large a disease without any available pharmacological treatments. Leaving many people diagnosed with the disease and their families left to manage the often long and drawn out disease on their own. Having to navigate the medical system in the hope to find specialist services that really understand their needs and can support them through their challenges.

Consider dementia as a life-limiting condition

World Health Organisation (WHO) defines Palliative Care as ‘an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.’

Dementia is a life limiting progressive disease, like most progressive cancers, it impacts many facets of a person’s life and their ability to care for themselves. The slow unpredictable nature of dementia progression is difficult for many health professionals to predict exactly how long or how fast one deteriorates. Over time the symptoms of dementia begin to take over an individual’s speech, their capacity to communicate or have insight, their mobility and much more. Dementia is a condition that becomes increasingly unbearable for many family carers and of course the individuals themselves.

So if dementia was more widely accepted as a terminal condition would this change the way community and primary care services perceive people with the disease? Would this enable people to access services that would support them and their families through their complex progressive disease?

When we have cancer we see an oncologist, when we have a Chronic Obstructive Pulmonary Disease (COPD) we see a Respiratory Physician, and when we have heart Failure we see a cardiologist. However, when we have dementia we often only see a GP. Whilst this is not an attack on either profession, merely it is highlighting the need for more people with dementia to seek the most suitable professional advice especially when complex behaviours and antipsychotic medications are involved.

A specialty area like dementia, deserves a team of specialist clinicians caring for them. Just like any other disease. Individuals and families with dementia often fall through the gaps, particularly if they are denied access to a palliative care services, with many of the public aged psychiatry teams only available on a short period of time. Whilst these teams offer a comprehensive service, they too are restricted in their capacity. With many family carers feeling as though they are on their own to manage the disease in it’s entirety.

Accessing Palliative Care Services

Historically, palliative care needs of patients with dementia are often poorly addressed and even in some cases people are denied access to these services. Dementia is different to other terminal diseases, often not ‘fitting’ into palliative care services tick box of symptoms. In most cases people with dementia do not have all the typical cancer related symptoms. There is however an increasing acceptance and a body of evidence to suggest the benefits of early involvement of palliative care services to assist people with a wide range of life limiting chronic conditions, including neurodegenerative conditions like dementia.

If we compare the person with dementia against the palliative care assessment tool it is no wonder that they are often denied access. The assessment tool omits one of the most significant concerns for people with moderate to severe dementia: which is behavioural and psychological symptoms of dementia (BPSD) and disturbed sleep wake cycle. Whilst pain, a common palliative care symptom, is often poorly recognised for people with dementia. With many studies reporting people with dementia live with untreated or recognised pain as a result. This is often due to the people caring for them not aware of pain cues for people with the disease. For example, in aged care homes, forty-per-cent of residents are totally unable to report pain due to a major cognitive or communicative disability. These figures are significantly high and palliative care services in these instances would have vital role to play in providing advice around adequate pain management.

Having worked in palliative care for some years now, I have seen a more recent shift in the acceptance of other chronic diseases being cared for and admitted under palliative care service. In previous years, however there was only the odd patient admitted with chronic diseases other than cancer and usually their admission was for end of life care, rather than symptom management.

Caring for people with a chronic disease when you haven’t had the necessary training does make it difficult for many clinician’s particularly when previously the focus of palliative care was based on the oncology model. Yet now as the prevalence of chronic diseases is increasing with an emphasis on promoting quality of life and comfort throughout the different stages.

Whilst these changes we are seeing are positive change especially for people with other chronic diseases, it appears at times to be a challenge for staff in community palliative care services.

With the prevalence of dementia forecast to increase, services must prepare to for the future now. This not only includes palliative care services but primary health, acute care and rehabilitation services. Health care professionals need to have training to support this group of patients, like they would with any other diseases they are supporting. There needs to be a greater emphasis placed on training all individuals providing direct care to the people with life limiting diseases.

Are you a family carer or nurse?  Tell us about what has your experience been with accessing community services? What would have made your role in caring for someone with a chronic disease a little easier? This applies to families and or nurses/carers in the community.

Please share your experience with us.

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