Risk factors, SAGE test, dementia stages, things to remember when talking with a person with dementia, transitioning to aged care, environmental design, holiday strategies and behavioural issues
This page has three sections:
Background Material that provides the context for the topic
A suggested Practice Approach
A list of Supporting Material / References
Feedback welcome!
Background Material
There are four major causes of dementia in older people: Alzheimer’s disease (60% – 70%), frontotemporal dementia, Lewy Body disease and vascular dementia. These can occur singularly or in combination.
When Alzheimer’s disease actually starts is hard to detect. Along with frontotemporal dementia and Lewy Body disease, it is progressive and degenerative—it takes time to evolve and can occur quickly (a few years) or over a long period.
Alzheimer's disease starts in the brain many years before symptoms are expressed. This is known as the 'preclinical' phase of the disease. People with Alzheimer’s disease
lose the ability to form new memories
experience loss of executive function—ability to plan the day, to think logically, organise oneself, get lost in space and time even in familiar surroundings
find Circadian rhythms are disrupted—orientation to time (e.g. get up and make a family dinner in the middle of the night)
find difficulty with expressive language and comprehension
can experience personality changes, e.g. quiet to outgoing and vice versa (sometimes inappropriately)
are often in a state of confusion.
Be aware of the potentially modifiable risk factors and work with people to modify these where possible: (i) low educational attainment, physical inactivity, depression, midlife hypertension, midlife obesity, smoking and diabetes; (ii) cognitively stimulating activities, (iii) social engagement; (v) Mediterranean diet:
Eat Regularly: Vegetables, fruits, nuts, seeds, legumes, potatoes, whole grains, breads, herbs, spices, fish, seafood and extra virgin olive oil
Eat in Moderation: Poultry, eggs, cheese and yogurt
Eat only Rarely: Red meat
Mild Cognitive Impairment is a decrease in cognitive function that is not clinically significant. Between 10% and 40% of people with MCI develop dementia but others recover. MCI is a risk factor for dementia, not a predictive factor.
Knowledge of the domains of dementia is necessary to assist the person and others involved in care:
Global—the consequences for the person, family and friends; counselling / problem solving may be necessary.
Cognitive—orientation, short-term memory, planning, judgement, and reasoning.
Psychiatric—delusions and hallucinations; depression can present as a psychiatric symptom.
Personality/behavioural changes—behaviour or personality changes that impact on the person and carers, e.g. making very inappropriate decisions about what they might say, both to family and in public, and/or making very detrimental decisions about how they spend their finances.
Dementia Australia (2019) has recently updated The Dementia Guide, which assists people living with dementia, their family and friends, to understand more about dementia and the treatments, support and services available. It provides information about living with dementia and ways carers can assist the person living with dementia.
The Self-Administered Gerocognitive Exam (SAGE) is a brief self-administered cognitive screening instrument used to identify mild cognitive impairment (MCI) from any cause and early dementia. The questions are more difficult than other similar questionnaires, such as the Mini-Mental State Examination (MMSE), to pick up those with very mild impairments. There is no fee to use SAGE for individual clinical use and non-commercial educational use (Ohio State University, 2022).
Practice Approach
A social worker may need to offer support to:
A person living with dementia, especially a person in the early stages of dementia,
A person living with dementia and carer together, especially in early stages of dementia,
The carer of the person living with dementia.
Like all people, those living with dementia and their carers should be supported with an emphasis on their autonomy, safety and comfort. As people move through the stages of dementia typical support includes the following.
In Stage One a key focus is around independence and autonomy. This may include maximising the person with dementia’s involvement in medico-legal planning (e.g. advance care planning), social connection, hobbies, and other meaningful activities that the person wishes to engage in.
In Stage Two safety considerations assume greater prominence. It might be that the person needs assistance or companionship in certain activities like cooking or going for a walk. If the person with dementia is unable to continue living at home, it is often at this stage that families may seek respite or institutional care. Helping carers discern a way forward that is in the bests interest of all can be quite difficult because of the feelings of guilt (e.g. around ‘abandoning’ and ‘failure’) that can arise in carers.
In Stage Three physical symptoms such as immobility, difficulty swallowing, and incontinence become the focus. Comfort and relief of related symptoms are the care and support priorities here.
Three practice models may be relevant: problem-solving, task-centred and solution-focused. However, listening with empathy to people and, if appropriate, using normalising strategies will be important. The practice approach on “Carers” is also relevant.
Much research has been carried out on dementia. Social workers should educate themselves around the disease itself, and the ways of approaching people living with dementia and their carers. The following information may help, as well as the supporting material listed at the end.
Further Information
Some things to remember when working with a person with dementia
Good communication tips for talking to people with dementia (from p. Guidelines p. 109 with source Alzheimer’s Australia (https://www.dementia.org.au/)) THESE ARE PRINCIPLES OF COMMUNICATION THAT PEOPLE LIVING WITH DEMENTIA HAVE TOLD US WOULD MAKE A DIFFERENCE TO THEIR LIVES.
TALK TO ME
Please talk to me, not my carer, family member or friend. Don’t prejudge my level of understanding.
PLEASE SPEAK CLEARLY TO ME
Make eye contact and speak clearly. Use short sentences, with one idea at a time. Avoid jargon, as I might misunderstand.
PLEASE KEEP QUESTIONS SIMPLE
Make sure I am listening and use simple questions and/or repetition, offered with sensitivity. It’s easier for me to answer direct questions, rather than open-ended questions, such as saying ‘Wasn’t it lovely when we went out to the park yesterday?’ not just ‘Wasn’t it lovely yesterday?’.
TREAT ME WITH DIGNITY AND RESPECT
I am still a person, so don’t patronise me. Respect and empathy are important to everyone. If I act differently it may be because I am having difficulty communicating or because of my disease.
DON’T QUESTION MY DIAGNOSIS
The symptoms of dementia are not always obvious. Listen to me and don’t minimise my feelings.
10 Principles of Dignity in Care (from p. Guidelines p. 109)
1. Zero tolerance of all forms of abuse.
2. Support people with the same respect you would want for yourself or a member of your family.
3. Treat each person as an individual by offering a personalised service.
4. Enable people to maintain the maximum possible level of independence, choice and control.
5. Listen and support people to express their needs and wants.
6. Respect people’s privacy.
7. Ensure people feel able to complain without fear of retribution.
8. Engage with family members and carers as care partners.
9. Assist people to maintain confidence and a positive self-esteem.
10. Act to alleviate people’s loneliness and isolation.
The person with dementia should be encouraged to exercise, eat well, keep doing as much for themselves as possible and stay socially connected in their local community. Encourage independence.
Do at least 30 minutes of moderate physical activity every day in as many ways as possible—incorporate fitness, strength, balance and flexibility. Start at a level that is easily manageable and gradually build up the recommended amount, type and frequency of activity.
People find it hard to say what they mean, and want those listening to stay with them and tolerate this aspect of dementia—stay in touch spirit to spirit. If a person can’t remember it doesn’t mean it’s not important or that the time together was not enjoyable.
Treat people with dementia as you would treat someone with a terminal illness (like cancer) and do not say, “Oh, that always happens to me.” That comment is hurtful.
Show people the respect that they are used to, that reflects standards they’ve had throughout their life. Includes speaking to person so that they feel like they’re functioning in a normal environment.
A person with dementia responds best to the familiar – e.g. favourite pillowcase, bedspread. Familiar makes them feel more safe and secure in new environment. People with dementia need to be able to identify their own space.
Enrich the environment. Put things around that make it more interesting for the person who’s living in it, e.g. magazines the person used to read left open and in conspicuous spots. Avoid clutter – clutter can be very confusing for the person. Also, be conscious of noise and activity.
Any important/useful information about person’s routines/habits/likes/history provided by family/friends should be documented and shared with staff involved in the person's care - used to support the person through their dementia journey.
Holiday Strategies (Bayer College of Medicine, 2021)
Be prepared to adjust your expectations based on your loved one’s tolerance for change. The sights, sounds and smells of the holiday stimulate the senses, while social demands and changes in routine and environment can trigger a stress response. If your loved one grows restless or anxious, take a “time out” and move to a quiet part of the house together, sit outside or take a walk together.
Instead of expecting your loved one to mingle in a crowd, choose a quiet, comfortable spot and have family members approach individually. One-on-one conversations are easier for your loved one than multiway discussions.
Avoid quizzing your loved one. Don’t test their memory, for example, “Do you remember who this is?” Instead, introduce each person by name and relationship i.e., “This is Jane, your niece from Boston.”
Include your loved one in the day’s events. Give them a task: Fold napkins, set the table, sort silverware, arrange flowers or wrap gifts. Value their participation over their performance of any task.
Rely on reminiscence. Your loved one’s memory for things long past is stronger than short-term recall. Sing classic holiday songs, ask about childhood memories, tell familiar stories.
Adhere to routine as much as possible. If a short nap, special TV show, or midday walk is customary for your loved one, try to incorporate this wherever you are celebrating. This includes the taking of medications.
Be mindful of your own stress level and how you are communicating. Emotions are infectious, and you may “transfer” your mood to your loved one. If you become frustrated, stressed or anxious, so does the person you are caring for. If you need help, ask for it.
Issues Relevant to Carers
A 2019 review (Quelez, et al.) into carer needs identified two key areas of need: personal health (especially emotional needs and physical health) and the provision of information (e.g. around how to manage different stages of dementia, and ways of coping with behavioural problems and changes in the person with dementia).
Carers should provide physical help to save embarrassment, but quietly and unobtrusively. This is exasperating.
Carers can become annoyed at having to do things their partner used to do—the change in traditional roles.
Carers will feel frustrated, guilty, tired and upset. It is important family share the workload, e.g. provide the immediate carer with support, validation, respite, knowledge and kindness.
A 2022 study by Duggleby et al. of how carers manage moving a person with dementia to residential or long-term care (LTC) found carers focused on ‘building a new life’. The literature suggests that family carers of persons living with dementia who are residing in long term care, often experience significant changes in their roles and relationships which affects mental and physical health. Building a new life can help improve this situation by reconnecting carers with activities and other people, experiences they had once enjoyed.
Carers built a new life by:
building new relationships (with their family member/friend, with LTC staff and with others outside of LTC), and
finding space for themselves (by sharing care with LTC staff (difficult for some people) and finding balance (difficult for some if they felt unable to relinquish some tasks to LTC staff.
Factors supporting building a new life were
understanding dementia,
support from others particularly other family members and friends,
connecting with resources when having a difficult time, including talking to other carers supporting people in the LTC, and
being included in care decisions through a structured way of communicating with carers and provision of opportunities to be involved in care decisions.
Social workers involved with the transition of people with dementia to long term care can use the above to work with carers to assist them in repairing their physical and mental health, aspects of life that often suffer when caring for someone with dementia.
Transition to Residential Aged Care (Fitzpatrick & Grace, 2019)
[The topic Caring: Looking After Others, accessed through the Contents page on this site, has a section on the transition to residential aged care.]
Many people with dementia eventually require residential aged care, frequently preceded by a hospital admission. Family carers often find the process challenging and disempowering, as they are expected to move their family member to residential aged care quickly. At this time carers value information, time to adjust to the need for placement in care and a supportive person to talk with, including about written information. Findings suggest that family carers would like a printed timeline or checklist to provide clarity in relation to the steps to residential aged care.
Social workers can provide information to family carers of people with dementia in hospitals in three ways:
A list of RACFs and suggested questions to ask when visiting. Ensure this is not overwhelming and support is provided to help navigate the list and questions.
Conversations with families tailored to individual needs. Carers clearly communicated their need to receive clear, concise, and up-to-date written information, a step-by-step timeline providing visual clarification about how to facilitate a timely transition, and to be given opportunities to ask questions in relation to the individual care needs of their family member.
Family meetings. These provide a clear understanding of future care needs and validate the change in caring role after many years of struggling at home. These meetings can be a turning point where carers received the validation of the medical team and in doing so, experienced a sense of relief that they were supported by professionals who understood the significant daily challenges of caring for a family member with an advancing cognitive impairment.
Social workers have an important role in promoting person-centred dementia care and enabling carers to feel confident and capable in their ability to make informed choices for their family member.
Design principles to help shape the environment for a person living with dementia
Unobtrusively reduce risks People with dementia require an internal and external environment that is safe, secure and easy to move around. However, obvious safety features and barriers will lead to frustration, agitation and anger and so potential risks need to be reduced unobtrusively.
Allow people to see and be seen It is particularly important for people with dementia to be able to recognise where they are, where they have come from and what they will find if they head in a certain direction. When they can see key places, such as a lounge room, dining room, their bedroom, kitchen and an outdoor area they are more able to make choices and find their way to where they want to go.
Reduce unhelpful stimulation The environment should be designed to minimise exposure to stimuli that are not helpful. The full range of senses must be considered.
Optimise helpful stimulation Enabling the person with dementia to see, hear and smell things that give them cues about where they are and what they can do, can help to minimise their confusion and uncertainty. However, don’t provide a number of cues to the same thing.
Support movement and engagement Aimless wandering can be minimised by providing a well-defined pathway, free of obstacles and complex decision points, that guides people past points of interest and opportunities to engage in activities or social interaction. The pathway should be both internal and external.
Create a familiar space A person with dementia is more able to use and enjoy spaces and objects that were familiar to them in their early life. The involvement of the person with dementia in personalising the environment with their familiar objects should be encouraged.
Provide opportunities to be alone or to be with others People with dementia need to be able to choose to be on their own or spend time with others.
Provide links to the community Without constant reminders of who they were, a person with dementia will lose their sense of identity. Frequent Interaction with friends and relatives can help to maintain that identity.
Behaviour Issues
Try to interpret what a person with dementia does from the point of view of the person. Think - Is the person’s behaviour quite rational from what they are understanding/how they are actually perceiving their environment? e.g. locking or barricading a door.
If behaviour changes, we should ask if they in discomfort. They may be cold or hungry. It might also mean, though, that they’ve got an infection that’s causing them discomfort, and so we would want to be alert to that possibility.
The person with dementia is not able to cope with as many stresses in daily life before they may have a reaction to what’s going on around them. Our presence may actually be contributing to the person’s behaviour – people with dementia are very aware of body language.
If bored, person will try to create their own entertainment and that can become a behaviour. Need activity that’s meaningful, not too hard, but consistent with their retained abilities, with their history and that they enjoy. Boosts person’s self-esteem if engaged in tasks where they think they’re helping out.
First steps in reducing behavioural and psychological symptoms of dementia
Prepare – get to know the person. Their life story, personality type, what they like, what they hate, favourite topics, occupation, hobbies, special people, pets, etc.
Maintain established routines – if the person always had a bath on Saturday before tea then keep this going.
Familiar items, pictures, objects in room and communal areas – sense of place, recognise their own things.
Environment – enriched, familiar, monitor noise and activity, appropriate lighting, access to outdoors, consider impact of locked doors.
Assessment – behaviour history from informant
§ What happens
§ How long ago did it start?
§ What helps?
§ What makes things worse?
§ Things to avoid?
§ How did the person previously cope with stress (e.g. went for a walk, punched the wall, walked the dog, etc.)?
§ Risk assessment
Dealing with some major behavioural and psychological symptoms
Wandering—ensure the person has a safe environment to walk in; think why the person wants to wander.
Anxiety—make the person feel their environment is safe, e.g. chart when anxiety occurs to try to discover the source. Therapeutic use of music and/or dancing may help
Withdrawn—is there an underlying problem that can be addressed?
Verbal and physical aggression—be calm, don’t attribute blame, don’t confront or argue. Important to maintain a bit of distance. Get out of the person’s way, giving them space, not showing you’re upset, angry, overwhelmed or frightened.
Sleep disturbances—these are common but look to other issues before we attribute sleep disturbance to dementia, e.g. pain, hunger, too cold or hot, surrounding noises
Resistance to personal care—let them know what we are going to do, take every step to maintain dignity. Be flexible and willing to adapt.
Communication—don’t take people by surprise - approach from front, little bit to the side, using their name. Reinforces sense of who they are. Reflect or mirror person’s expression (e.g. smile or be concerned depending on how the person is), use lower pitched voice, make sure any sensory aids—glasses or hearing aid—are present and functioning.
Supporting Material
(copies available on request)
Website: Dementia Australia (https://www.dementia.org.au/; phone 1800 100 500)
MOOC: Understanding Dementia https://www.utas.edu.au/wicking/understanding-dementia
MOOC Preventing Dementia https://www.utas.edu.au/wicking/preventing-dementia
Aged Care Royal Commission (2019): Background Paper 3
Alzheimer’s Communication (10 tips to enhance communication with people with Alzheimer’s Disease)
Bayer College of Medicine. (2021). Alzheimer’s disease and the holidays. Retrieved from https://neurosciencenews.com/alzheimers-christmas-19815/
Queluz, F., Kervin, E., Wozney, L., Fancey, P., McGrath, P., & Keefe J. (2019). Understanding the needs of caregivers of persons with dementia: A scoping review. International Psychogeriatrics, 1-18. doi:10.1017/S1041610219000243
Fitzpatrick, K. & Grace, M. (2019) Dementia Patients’ Transition to Residential Aged Care: Carers’ and Social Workers’ Experiences, Australian Social Work, 72(3), 287-298, DOI: 10.1080/0312407X.2018.1536155
Clinical Practice Guidelines and Principles of Care for People with Dementia: Guideline Adaptation Committee. Clinical Practice Guidelines and Principles of Care for People with Dementia. Sydney. Guideline Adaptation Committee; 2016. [To be updated by January 2021].
A Consumer Compantion Guide to these Guidelines is also available at http://sydney.edu.au/medicine/cdpc/documents/resources/Dementia-Guideline-Guide-2017-WEB.pdf
Supporting Decision-Making (2018)
Dementia Australia. (2022). The dementia guide, edition 3. https://www.dementia.org.au/resources/the-dementia-guide
Contents 1. About dementia
· What is dementia?
· Who gets dementia?
· What causes dementia?
· How does dementia affect younger people?
· How does dementia progress?
2. Understanding your diagnosis
· Recognising your feelings
· Learning more about dementia
· Telling people your diagnosis
3. Healthcare team and treatments
· Building your healthcare team
· Understanding your treatment options
· Treating depression and anxiety
4. Planning for the future
· Driving
· Working
· Legal matters
· Financial management
· Government support
· Advance care planning
5. Living well
· Living with changes
· Reducing stress
· Maintaining communication
· Navigating changed relationships
· Living at home
· Traveling safely
· Staying healthy and active
6. Government support for people living with dementia
· My Aged Care
· National Disability Insurance Scheme
· Local services
7. Dementia Australia services
· Information services
· Support services
· Education services
8. Residential care
· Identifying the right time
· Choosing a care home
· Understanding fees and costs
· Eligibility for Australian Government-funded residential care
· Making the move
· Managing visits from family and friends
· Protecting your quality of care
9. Later stages of dementia
· Understanding palliative care
· Supporting your needs with palliative care
10. Checklist
· Things to help a person with dementia live well now and make plans for the future
o In the first month
o Over the next six months
11. Support and information for carers
· Getting emotional support
· Getting practical support
· Looking after your health and wellbeing
· Supporting a person with dementia
· Changes in behaviour
· Grief and bereavement
12. Stay connected
· Monthly eNews: https://www.dementia.org.au/newsletters
· Social media channels
o Facebook: https://www.facebook.com/DementiaAustralia
o Instagram: https://www.instagram.com/Dementia_Australia/
o Twitter: https://twitter.com/DementiaAus
o Linkedin: https://au.linkedin.com/company/dementiaaustralia Dementia Training Australia offers free online courses: https://dta.com.au/
Degrees of Forgetfulness and Alzheimer’s Disease: A comparison of normal forgetfulness and forgetfulness that may indicated early Alzheimer’s Disease.
Namaste Care Programme Toolkit
Dementia: Reducing Your Risk (www.alzheimers.org.uk)
Ohio State University Wexner Medical Center. (2022). SAGE: A test to detect signs of Alzheimer’s and dementia. Retrieved from https://wexnermedical.osu.edu/brain-spine-neuro/memory-disorders/sage
Reablement booklet: program suggestions to maintain or improve a person’s function (2018). https://www.hammond.com.au/documents/free-resources/48-reablement-sector-handbook/file
Dementia Australia. (2109). The dementia guide: For people living with dementia, their families and carers. Retrieved from https://www.dementia.org.au/sites/default/files/resources/The-Dementia-Guide-2019-v2.pdf
Websites – carers
Caring for someone living with dementia: https://www.myagedcare.gov.au/caring-someone-particular-need/caring-someone-dementia
Caregivers guide to understanding dementia behaviours: https://www.caregiver.org/caregivers-guide-understanding-dementia-behaviors
Resources for carers in Australia: https://www.dementia.org.au/information
Younger Onset Dementia: