Supporting independence and quality of life for people with dementia at the end of life

Supporting independence and quality of life for people with dementia at the end of life

A blog post written by Associate Professor Kate Laver, Occupational Therapist, College of Medicine and Public Health, Flinders University

Dementia is the leading cause of death for women in Australia and a leading cause of death for males. People diagnosed with dementia typically experience a gradual decrease in function over several years. Clinical practice guidelines for dementia recognise that rehabilitative and palliative care services are both appropriate for people with dementia and specifically state that “improving quality of life, maintaining function, and maximising comfort are appropriate for people living with dementia throughout the disease trajectory, with the emphasis on particular goals changing over time”.

So, how can we improve quality of life and maintain function in people in the advanced stages of dementia?

Firstly, people with dementia experience a gradual decline in cognitive and communication abilities. It is important to have early conversations about what is important to the person and contributes to their quality of life. Knowing their preferences and having an advance care plan in place is helpful for families and health and aged care workers.

Secondly, guidelines state that people with dementia should continue to be offered food and drink by mouth and that artificial feeding should generally not be used in people with severe dementia for whom swallowing problems or loss of appetite are related to the disease process.

Thirdly, drugs to manage symptoms of agitation or distress should be avoided when possible. People with advanced dementia experience a variety of symptoms and have increasing difficulty communicating their feelings and needs. Consequently, they may appear upset or distressed and be unable to explain why. Guidelines recommend that a thorough assessment is undertaken to try and understand the problem (e.g. pain, thirst, disorientation) and identify solutions. Drugs that are prescribed to manage behaviour (e.g. antipsychotics) should only be used when alternative non-pharmacological strategies are not working and the person is severely distressed or there is a risk of harm to the person or others.

Finally, there are a number of ways in which families, and hospital and residential care staff can offer support and services to promote wellbeing. Consistent rostering of staff, avoiding transitions in care, using strategies to assist in retaining continence are all important. Doing with the person (e.g. bathing, self-care, eating) rather than doing to the person is essential and ensuring the person has access to appropriate and meaningful activities which match their capabilities. For someone with advanced dementia, this can include activities such as non-verbal communication with others, listening to or playing music, massage, and animal-assisted therapy.

Above all, people with dementia want dignity in care. Staff should be familiar with and know how to put the principles of dignity in care into practice.

Useful links:

Principles of Dignity in Care

Clinical Practice Guidelines for Dementia in Australia – Recommendations (515KB pdf link shown below)

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Associate Professor Kate Laver, Occupational Therapist, College of Medicine and Public Health at Flinders University and ARC Discovery Early Career Research Fellow, Department of Rehabilitation, Aged and Extended Care

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The views and opinions expressed in Palliative Perspectives are those of the authors and are not necessarily supported by CareSearch, Flinders University and/or the Australian Government Department of Health.