This week’s ABC 7.30 footage of elder abuse in an Adelaide nursing home is an extreme example of how things can go wrong in the care of vulnerable older people with dementia. Suspecting mistreatment, the resident’s daughter secretly placed a camera in her father’s room. The vision is deeply disturbing.
Admitting a loved one to a nursing home is a difficult decision and is usually only arrived at once the person’s care needs cannot be met by the family and community-based services. Dementia has profound consequences for the quality of life for those with the condition, their family and friends.
So what should families consider when seeking care for someone with dementia? In addition to bed availability, cost and location, it is worth asking these key questions.
1. Is there a dementia-specific unit?
Many aged care facilities have specialised dementia units, which are home to people with severe behavioural and psychological symptoms of dementia.
Dementia units or wards have specialist doctors, registered nurses, care assistants and allied health staff who have expertise in caring for residents with dementia.
2. Is the dementia unit appropriately designed to meet the needs of people living with dementia?
Dementia units are purpose-built so residents can retain their abilities with minimal frustration. They may, for instance, have a familiar home-style layout that accommodates only a small number of residents.
Well-designed outdoor spaces are a great asset to a dementia unit. These should be easily accessible, interesting, safe and secure. Ideally they should include fixed seating and allow residents to easily return indoors.
3. Will your family member be regularly seen by a GP? Will they have access to nurse practitioners, clinical nurse consultants and doctors specialising in dementia aged-palliative care?
Optimal dementia care is focused on reducing symptoms, maximising the patient’s comfort and dignity, and preventing suffering.
Aged care facilities should employ or contract doctors, registered nurses and care assistants who are highly experienced and skilled. They are best able to manage these complex and challenging symptoms and behaviours.
4. Are experienced registered nurse(s) on duty and on site 24 hours, seven days a week? How much time will these registered nurses spend with your family member each day? How many residents is a registered nurse responsible for per shift?
The complexity of older people’s care needs demands that registered nurses are on duty at all times. To improve care and better manage the needs of older people living with dementia, we need highly skilled registered nurses and care assistants to work collaboratively with the older person, their family and their GP.
A major limitation to achieving this goal is that the care assistant workforce is under-prepared to be performing the tasks they currently undertake and too few registered nurses are employed to support and supervise them. Care assistants working in residential aged care require formal, ongoing high-quality vocational education focused on the patient and their aged-palliative care needs.
Many dementia residents have complex and challenging behaviours. Dementia is a terminal illness caused by brain disease or injury. It affects the way people think, behave and perform everyday tasks.
At times, this means some people with dementia may refuse care or food, and become aggressive, restive or disorientated. They may not be safe to be left alone and need help to dress, bath and feed themselves.
In more severe cases, they can have depression or angry violent episodes. This is made more difficult as nearly 44% of residents with dementia also have a diagnosis of a mental illness.
5. Does the nursing home have a formal communication strategy? How will the nursing home communicate any changes in the older person’s condition?
The needs of every person living with advanced dementia are unique. Therefore, communication about what your loved one likes and dislikes is essential in planning the strategies staff use to care for them.
When the person and their needs are at the centre of the care decisions, they can get the best care they need to feel calm and respected.
6. Does the nursing home have a diversional therapist and physiotherapist?
Nursing homes can employ staff such as diversional therapists or recreational staff to give dementia residents focused events throughout the day.
These staff play an important role in the management of dementia by providing activities and time for patients to do things they enjoy with other residents or family members.
An example of an activity is participation in music therapy, singing, movement or dancing if able. Research is starting to show the emotional and social benefits of regular musical activities on quality of life.
Various inquiries and reports have called for greater investment in aged care and reforms to better care for older Australians, but too few of these recommendations have been acted on. Greater investment can ensure each individual is given the care, dignity and respect they deserve in the last years, months or days of their life.
Jane Phillips is the current President of Palliative Care Nurses Australia.
Louise Hickman does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond the academic appointment above.
Authors: Louise Hickman, Associate Professor of Nursing, University of Technology Sydney