Living with dementia - Where to start

Receiving a diagnosis of Alzheimer's disease or learning that a loved one has dementia can evoke strong feelings of uncertainty and stress. 

People often feel that they are in limbo after a diagnosis. Whilst a diagnosis of dementia may answer some questions, it will open up new ones for the future.

In this article:

• Caring for someone with dementia
  
• Finding out about dementia and Alzheimer's disease
  
• Organising home care assistance and support
  
• Planning for residential care
  
• Sort out legal and financial affairs

Caring for someone with dementia

Caring for a person with dementia can be rewarding. It can also be very challenging. As Alzheimer's disease or dementia progresses, a person will need more assistance with activities of daily living like showering, eating and toileting.

Carers can find this difficult at first and you may have to experiment with different strategies or get outside help until you find what works for you. Learning caregiving skills will make your role easier and make a loved one feel safe and supported.

Carers Australia looks after the needs of carers. They offer support and a range of services to assist people to care for others. They can also give you information about the relevant support groups available in your area. Talking to other people about Alzheimer's disease and learning how others have coped can be of great assistance. 

Finding out about dementia and Alzheimer's disease

Gathering as much information as you can about dementia can help you and a family member feel more in control of the future. 

Dementia affects everyone differently. Learning all you can about dementia and Alzheimer's disease can help everyone understand the complex nature of the condition. It can also give you some insight into why a person is behaving as they do.

Dementia causes cognitive and behavioral changes that can be challenging to manage. Alzheimer's Australia is the peak body for dementia information and support. They run information sessions and workshops for carers and people with dementia.

Organising home care assistance and support

Look into the number of community home support services available to you. Even if you do not plan to use them immediately at least you can have a greater understanding of the services available to you and be able to plan ahead.

Commonly used services include home help which provides assistance with personal hygiene, cleaning and shopping. There are now many services that allow a person living with dementia to stay at home for longer.

Day care and respite centres give carers a break from the caring role. They also provide relevant social activities for people with dementia. It is important to encourage people with dementia to continue with any hobbies or interests they find enjoyable. 

Planning for residential care

In the more advanced stages of dementia, residential care may need to be considered. Talk to local service providers about waiting lists for residential services, what's on offer and for any other advice they can give you. Services will vary greatly depending on where you live.

It can help to have some knowledge of the type and quality of residential services on offer in your area. Understanding the financial implications of residential care can also help families plan for the future and get their finances in order. 

Sort out legal and financial affairs

Although difficult, planning ahead and thinking about the future can be useful. At some point in the course of dementia a person will no longer be able to make rational decisions.

It is important that people with dementia make known any preferences or wishes they have regarding their future early on. Family can then make decisions knowing they are carrying out a loved one's wishes.

A person with dementia needs to organise an enduring power of attorney as early as possible after diagnosis. Nominating an enduring power of attorney can help family avoid future disputes and problems.

An enduring power of attorney is an arrangement whereby a person is elected to make financial and legal decisions for another person should they become incapable of making those decisions themselves due to illness or injury.

You may want to think about organising financial affairs such as bank accounts and issues of guardianship, wills and advanced care directives. 

Who can help?

•  For information about dementia visit Alzheimer's Australia 
•  Call the National Dementia Helpline on 1800 100 500
•  For information on home care services in your area call Commonwealth Carelink Centres on 1800 052  222
•  For support with caring contact Carer's Australia on 1800 242 636