The Nightingale Program
Dementia-specific palliative care support.
The Nightingale Program is a palliative model of advanced dementia care throughout South Australia. The program is provided by specialist nurses.
It’s available free of charge and provides strategies and advice to support people living with advanced dementia, their families and care providers, with a focus on promoting choice, well-being and forward planning.
The program supports people living at home, in residential aged care and community settings.
How we help
Offering a specialist nurse as the single point of contact, we can develop care strategies to enable people living with dementia to:
- Stay at home longer and maximise their independence.
- Promote quality of life and positive relationships.
- Have a voice in their future care options and decision making.
- Avoid unnecessary presentations to acute hospital settings.
- Have clinical advice including co-morbidity management, pain management, delirium and palliation.
This service is funded by The Rosemary Foundation for Memory Support and Country SA PHN.
How to access the Nightingale Program
- Call the National Dementia Helpline on 1800 100 500.
Transcript
[Beginning of recorded material]
[Title card: Dementia Australia]
[Title card: Palliative care and dementia]
Sarah: Hello, and welcome everyone to Dementia Australia's expert webinar on palliative care and dementia. I would like to begin by acknowledging the Traditional Owners of the land on which we meet today. I would also like to pay my respects Elders, past and present, and to our shared futures. My name is Sarah and I'm a Registered Nurse working in Dementia Australia's Nightingale program in South Australia, which follows the palliative model of care designed to maximise wellbeing, and empower clients to exercise choice and control.
Dementia is a life limiting, progressive condition. In recent times, there's been an increased focus on how to care for someone with advanced dementia. And today, we'll be talking about palliative care, the progression of dementia, and supporting person who is dying with dementia. And I'll be talking about a palliative approach, and palliative care, how they can help, and when they're needed. I'll also address life expectancy, and how dementia leads to death. Following on, I will then speak about knowing when palliative support is needed, considering the options, and what is involved in making end of life decisions. And finally, I'll cover what people might expect to see at the end of a person's life, and what services and resources are available to help.
Palliative care can be a confusing term because for many people, it conjures up an image of a person who is about to die. However, palliative care encompasses much more than supporting a person who is dying. It is both an approach, and a service. As an approach, it focuses and wellbeing and quality of life for the person living with dementia, their family, and the people supporting them. As a service, it supports them in a practical way, with the symptoms and issues that occur towards the end of life.
A palliative approach aims to prevent and relieve distress and ill being through early planning, identification of physical, psycho-social and spiritual issues, and the management of symptoms.
So, if we break that down a bit more, a family might start planning as soon as they're aware of a life limiting diagnosis such as dementia.
Ideally, the planning stage starts from the time of diagnosis onwards. It's important to include, if possible, the person who is living with dementia. And we encourage early planning so that they can be actively involved in the discussions, the planning, and the decision making. However, that may not be the right time for everyone, and whilst it's ideal that the person who's living with dementia is actively involved, it may not always be possible. So, start at the stage where you're at now, as it's never too late to start planning for end of life.
Planning is helpful as it enables frank discussions, and takes everyone's goals and needs into account because, of course, the diagnosis doesn't just impact the person who's living with dementia. Ongoing conversations include the person who has the diagnosis, their family, and other people who are providing support and services. And such conversations lead to the creation of a firm but flexible plan, as it's important to recognise that plans may need to change as circumstances change. And a plan that works across the coming weeks, months, or years. The plan enables the person who's living with dementia to express their wishes and preferences, set goals, and consider what they would like, or where they would like to be supported as their dementia progresses, and they reach the end of their life. Seeking expert advice, learning about the course of dementia, talking together with family members and with the people who provide services, starting with your GP, and making sure that the people around you understand the plan, can all help.
After the planning stage, the palliative approach continues. An ongoing palliative approach over the course of someone's life with dementia, provides a focus on quality of life, on living well with dementia, managing symptoms that may arise, and maintaining connection to one's community, and finally, addressing the challenges that may occur. And then, when the person has advanced dementia and their body is starting to shut down so that they're actively dying, the palliative approach becomes palliative care.
Having said that, palliative care is not just about the last few weeks of life, as this final stage can sometimes last for a year or more depending on the person's age, the other health conditions they may have, and what is happening in their life. And this support of a dying person and their family is, as I mentioned earlier, what most people think of when they hear the term palliative care. Palliative care supports the person, their family and caregivers to manage and relieve physical, emotional, spiritual, and social symptoms, and address the issues that can occur with dying, to optimise quality of life and comfort. Palliative care also includes bereavement support.
Life expectancy for someone diagnosed with dementia, is determined by a variety of factors. We know that dementia is a progressive illness that leads to a person's death, but because it's different for each person, their life expectancy will depend on their age at diagnosis, the stage of their dementia, the type of dementia they're living with, their environment, and the other health conditions they may have. People die of, and with dementia. On average, life expectancy is several years from diagnosis, although for some, it will be shorter, and for others much longer. For example, the average life expectancy for someone living with Alzheimer's Disease is approximately seven to 10 years, but this can vary enormously.
For many people, there are several years of living well with dementia, and the palliative approach supports them to have quality of life. However, during this time, the dementia continues to progress, and it does eventually lead to the person's death. Dementia ends a person's life by causing progressive damage to the brain. Brain cells die and connections between brain cells are disrupted. And as the damage increases across the brain, more and more thinking and physical functions and abilities are damaged, which means that a person may start to experience hallucinations, seizures, increasing immobility, and a variety of thinking and physical symptoms and changes. And eventually, the body starts to shut down as the autonomic functions that keep us alive, such as breathing and keeping our heart beating, become overwhelmingly damaged, and life is not sustainable.
Supporting a person living with dementia requires a specialist palliative approach. This is because the course of dementia is complex, and quite different to the defined stages that occur with other life limiting conditions such as cancer. For example, it can be difficult to distinguish the changes that indicate that someone is nearing the end of their life from progressive symptoms of dementia. So, starting earlier with a palliative approach for someone living with dementia enables the focuses to be on quality of life and living well. It supports the person, their family and caregivers to plan ahead, plan for the end of life, manage symptoms, address issues as they arise, and ensure comfort. It also supports their choices and individuality, and cares for the psycho-social and spiritual needs of them and their families. Focus for the person living with dementia is on the relief of symptoms rather than treatment. For family and caregivers, it provides emotional and practical support before, during, and after the person's death.
Knowing when to engage palliative care services can be difficult for families. Recognising that someone is reaching the end stage of dementia can be hard, because the course of the condition varies so much for each person. However, there are some common signs that a person living with dementia may experience. These may include an increase in physical symptoms such as difficulty walking, and becoming chair or bed fast. Urinary and bowel incontinence, increasing numbers of infections, such as urinary tract infections or pneumonia, and difficulty swallowing. Because the body is starting to shut down, a person will also start to eat less, lose muscle mass, and lose weight. In addition to these physical signs, personal circumstances or issues, other health conditions and family needs will also determine when it's time to initiate palliative care.
Families do not have to make the decision to start palliative care by themselves, as GPs, allied health professionals, and support services are most likely involved in the person's care by this stage. Seeing some of the common signs mentioned in the last slide may be the indication to start talking with your GP about palliative care services. When it's time for palliative care to start, a person's current support is reviewed, as certain therapies, treatments, and medications may no longer be helpful. Support will focus more on providing comfort, managing symptoms, addressing issues, and supporting the person with advanced dementia to die with dignity and in comfort. And once the end stage is recognised, engagement with specialist palliative care services can enable end of life planning, provide comfort, care, and symptom management, and prepare families.
A person who is living with advanced dementia might be living in a residential facility, their own home, or they may be in hospital. A person can receive palliative care no- matter where they're living. All residential aged care facilities provide palliative care, and manage end of life needs. And many hospitals have specialist palliative care staff. In addition, specialist palliative care services can liaise with hospitals and residential aged care facilities. It's important that the palliative plan be shared and discussed with the care team. There are palliative care services in all states and territories. And at home, community palliative services can offer information and support.
If you are supporting a person who is living with dementia and is wanting to die at home, there are some factors to take into consideration. Deciding how and where to provide palliative care is determined by the person's documented advanced wishes, their spiritual, religious, and cultural beliefs, their family, informal and formal supports, healthcare providers, the symptoms the person is experiencing, the environment, and the availability of services in your area. Anecdotally, many people would prefer to die at home, but it may not be the best option for everyone. The ability to support someone to die at home is your choice, but it does depend on those factors I've just mentioned.
Consider whether home is the best option for family, your emotional and physical capacity to provide around the clock care, the services that are available in your area, whether the GP does home visits, whether your family and friends have capacity to provide support, your circumstances, and what is happening for the person living with dementia. If it something that the person who's living with dementia you and the family would like to consider, ask questions, and get advice.
On a practical level, consider whether you can access support through My Aged Care, or the National Disability Insurance Scheme. Find out if there are palliative care services available in your area. Can you access emergency respite and support? If you feel that staying at home is the best option for your family, start an end-of-life plan, and consider whether you can do it long-term or for short periods. Think about what support you need to make it possible, and to keep going. And finally, consider alternative plans if circumstances change, and dying at home is no longer achievable. Having a general plan, and then a working and evolving plan, may help as needs and circumstances change.
As you care for someone who's reaching the end of their life, knowing what to expect and what the person living with dementia might experience in the last few weeks and days can be helpful, and reduce some of the fear. As a person enters the last few weeks of life, they may sleep more and be more confused. They may also experience pain, lose their appetite, and have an increasing inability to swallow food safely. And as someone progresses to their last week of life, they might become increasingly drowsy, or may eventually become unconscious. There may also be shortness of breath, agitation and restlessness, and changes to their skin with mottled and cool hands and feet. Secretions may collect in the back of their throat leading to noisy gurgling breathing. And the pattern of their breathing may also change and become irregular.
All of these symptoms can be treated so that the dying person is comfortable and not distressed. However, not everyone would experience all of those symptoms, and usually, in the last few days, dying is a peaceful process. The comfort care at this time is gentle, sensitive, and flexible. A mix of physical, spiritual, and emotional needs of the person who is dying. In addition, their family will be supported emotionally and psychologically so that they are reassured, kept fully informed, and understand what to expect next through each step of the dying process. Making sure that the dying person and their family is well supported is the priority. And it occurs whether someone is being supported at home or in a residential aged care facility.
When a person dies at home, there are a variety of tasks that need to happen afterwards. Having a palliative care plan in place that provides guidance around what to do, when and after a person dies, certifying their death, contacting a funeral director, registering the death, and accessing bereavement support can be very helpful. There is no rush to do anything straight away, and you can take the time that you need before contacting the doctor or the palliative care services. You will need time to say goodbye.
As well as practical support services, there are also other resources that may help you. Palliative Care Australia has a useful booklet for carers on the dying process, and Dementia Australia has help sheets on the later stages of dementia and palliative care. If you would like further information, you can contact the National Dementia Helpline on 1800 100 500, or go to the Dementia Australia website, which is dementia.org.au. You can also go to the Palliative Care Australia website to find services in your state or territory, and access their carer fact sheets and videos. Their web address is palliativecare.org.au.
For information and support if you are caring for someone who is experiencing changed responses, the impact on their care, you can contact the Dementia Behaviour Advisory Service on 1800 699 799, or go to their website at dementia.com.au. They also have help sheets and care support guides. Thank you for watching today. If you have any questions, please do not hesitate to contact our helpline on 1800 100 500.
[Title card: Together we can reshape the impact of dementia]
[Title card: Dementia Australia. 1800 100 500. Dementia.org.au]
[END of recorded material]
The National Dementia Helpline
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