Dementia - support for people who live alone

Caring for someone with dementia who lives alone can be difficult and, at times, overwhelming. Many organisations provide services for people with dementia and for their families and carers.

Finding information about dementia

As soon as a diagnosis of dementia is made, it is a good idea to find out as much as you can about dementia and the immediate help and support that is available.

Contact Alzheimer’s Australia in your state or territory directly on the National Dementia Helpline. Trained and experienced professionals staff this helpline. Because state and territory organisations of Alzheimer’s Australia provide the National Dementia Helpline services, you get accurate, local information, as well as support, advice and counselling.

Another good source of information is Carers Victoria, which provides information about support services and how to contact them. Some of their brochures and fact sheets are available in a number of community languages. This provides a range of practical information for carers.

Caring for someone who lives alone

Each person with dementia is unique and so is their personal living situation. While most people live with a partner or in some type of family situation, increasingly, many people live alone. This may be by choice or by circumstance. Whatever the reason, it creates a particular challenge for the people who care for them.

People diagnosed with dementia are not automatically unable to care for themselves. Helping a person to remain in the familiar surroundings of their home for as long as possible is a worthwhile goal, but it can be very worrying for family and friends.
The type of support required depends on the situation. The person living alone may:

• forget to eat or take prescribed medication
• forget to bathe or change their clothes regularly
• lack awareness of potentially hazardous situations, such as fire or electrical appliances
• show poor judgement about who they let into the house
• have unrealistic ideas or suspicions, which can lead to trouble with neighbours, the police or the community
• forget to feed or care for pets.

Some of these situations can be dealt with fairly simply. For example, if the person is forgetting to eat, it could help to arrange delivered meals, such as Meals on Wheels, and then call or have someone visit to remind the person to eat the meal. Other situations may endanger the person’s safety and wellbeing, in which case a move to more supervised care may have to be considered.

How carers can help people with dementia

Important things that carers and families can do to help people with dementia who live alone include:

• accepting a degree of risk – acceptable risk will need to be reviewed regularly by family members and healthcare professionals, while also considering the wishes of the person with dementia
• family involvement – organise a family meeting at an early stage to work out what each family member can offer, now and in the future
• household safety – make sure that the house is well lit and that there are no hazards, such as faulty kitchen appliances, loose carpets or unsteady furniture
• aids to independence – aids that can assist people to stay independent include handrails (near the bath, shower and toilet), easy-to-read clocks and large calendars to help orient to date and time, personal alarms or monitoring systems, and reminder timers (particularly for medications)
• managing finance – get legal and financial advice while the person can still participate in the decisions
• telling other people – explain the person’s condition and provide contact numbers to friends, neighbours, local shopkeepers, people on neighbouring farms and the local police
• making sure that the person with dementia has adequate identification and an emergency contact number when they go out.

Support groups for dementia

There are a large number of support groups throughout Australia for people with dementia and for their families and carers. Many people gain enormous comfort and practical help from attending these meetings with others who share similar experiences.

Carer support groups bring together carers, relatives and friends of people with dementia on a regular basis under the guidance of a group facilitator. This is usually a healthcare professional or someone with firsthand experience of caring for a family member. There is no charge for attending. To find the location of your nearest support group, contact the National Dementia Helpline.

Counselling for dementia

Alzheimer’s Australia provides a free specialist counselling service for people with dementia, family members and carers. This provides the opportunity to talk through emotional, practical and family issues in confidence.

Health services for dementia

Health services that offer help and support include:

• your family doctor – is often the first person that people talk to about their concerns. A doctor may assess the person for dementia and can refer them to a specialist. The family doctor will most likely be the main health professional providing ongoing healthcare for both the person with dementia and their family member
• Cognitive Dementia and Memory Services (CDAMS) – these specialised services provide expert assessment and diagnosis to people with memory loss or changes to their thinking. The family doctor can refer people to CDAMS, or CDAMS can be contacted directly, where there are concerns about cognitive impairment
• Aged Care Assessment Service (ACAS) – the family doctor can refer a person with cognitive impairment to the ACAS team or ACAS can be contacted directly. ACAS teams are made up of doctors, social workers and other health professionals, who can help work out what kind of care will best meet needs when extra assistance is required. They will ask a series of questions to find the best care option for the person with cognitive impairment
• My Aged Care – is an Australian Government information line and website that provides support and help with queries about access to home and community care, respite fees, and bonds and charges.
• Commonwealth Respite and Carelink Centres around Australia – provide information about the range of community-care programs and services available to help people stay in their own homes
• the Carer Advisory and Counselling Service – provides carers with information and advice about relevant services and entitlements
• the Royal District Nursing Service (RDNS) – provides home nursing, assistance with medication, advice and referral
• other health services – such as physiotherapy, podiatry, speech and occupational therapy are available to help people with dementia and to advise their carers.

Home support services

There are many services that offer extra support to help people live more comfortably in their own home. Some of the most commonly used services for people with dementia living at home include:

• Home and Community Care Program for Younger People (under 65) – provides support for people with disabilities whose capacity for independent living is at risk.
• Meals on Wheels – provides home-delivered meals.
• Independent Living Centre – in each state or territory – offers a number of services designed to promote safe living. Advice on home modifications is available.

Respite care

Taking a break is often known as respite. Respite can give family members a break from caring, and a chance for the person with dementia to take part in social or recreational activities.

Respite can be provided in local day-activity centres. Some centres offer specialised activities for people with dementia. The amount of care offered by day centres ranges from a few hours to five days a week. Some centres offer weekend or overnight care.

Another way to take a break is to have a respite carer come to the house of the person with dementia or to take the person with dementia to an activity they enjoy. This means the family can do things outside the house or take a break. This is often called in-home respite.

Respite can provide care in an emergency or can be arranged for a longer period in a residential facility.

Aged Care Complaints Scheme

If you have a concern about the care you or someone else is receiving, it is important that you talk about it. Complaints can help aged care providers improve the services and quality of care they provide to you or your loved one. One complaint from you can help other people.

For complaints regarding residential facilities and Community Aged Care Packages, call the Aged Care Complaints Investigation Scheme.

Where to get help

• Your GP (doctor)
• Your local council
• Your local community health centre
• National Dementia Helpline, Dementia Australia Tel. 1800 100 500
• Aged Care Assessment Services Tel. 1300 135 090
• My aged care Tel. 1800 200 422
• Cognitive Dementia and Memory Service (CDAMS) clinics
• Carers Victoria Tel. 1800 514 845
• Carer Gateway Tel. 1800 422 737
• Dementia Behaviour Management Advisory Service (DBMAS) Tel. 1800 699 799 – for 24-hour telephone advice for carers and care workers
• Royal District Nursing Service Tel. 1300 334 455 (24 hours, 7 days)
• Independent Living Centre Advisory Service in each state and territory Tel. 1300 885 886
• Aged Care Complaints Investigation Scheme Tel. 1800 550 552.