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Support person

The Support Person needs to be considered in the care planning for a person living with dementia. If possible they should also have their own care plan.

The ability of the person living with dementia to live as independently as possible in their own home very often depends upon the Support Person.

The Support Person will experience their own health issues, lifestyle changes and concerns about the future. 

The use of respite is often essential to continue the Support Person role.

Support persons and families may benefit from counselling offered by Dementia Australia or Commonwealth Respite and Carelink Centres.

It is important to remember that there are rewarding as well as challenging aspects to supporting a person living with dementia.

Further detail and prompts for consideration can be found below.

Support person

When talking with a Support Person consider:

Knowledge and insight

  • knowledge, understanding and attitude to the cognitive impairment experienced by the person they are supporting

Own health

  • Chronic disease management
  • Mood and mental health

Quality of life

  • Maintaining “own life”
  • Social connection and supports
  • Relationship with the person they are supporting
  • Grief and loss
  • Participation in enjoyable activities
  • Cessation of enjoyable activities due to caring responsibilities

The responsibility of caring

  • Role changes
  • Rewards and challenges of caring
  • Is there anything in particular they would like help with

The future

  • Concerns for the future
  • Ability and/ or desire to continue with being the Support Person
  • A time when would reconsider ability to continue with the role of Support Person

If the Support Person is under significant stress the Zaritt Carer Burden scale can be useful in identifying areas of concern for further discussion.

 

Respite support services

Carers of people living with dementia will sometimes need support to help them to continue in their caring role. Respite can be provided in the home, community and in residential care facilities.

Possible respite options include:

  • In home respite care
  • Planned activity group
  • Social support & friendly visiting services
  • Cottage respite houses
  • Residential respite

For referral and advice contact Carer Gateway.

Support Persons can be reluctant to use respite. Common reasons include:

  • Worry about leaving the person
  • Feeling that nobody can look after them as well
  • Concern they are neglecting their duty
  • Belief that others will think they cannot cope

Concerns are normal but they need to be balanced against the risk of burn out. Regular breaks allow time to re-energise, enjoy different activities and concentrate on other relationships.

Respite can also be a break for the person being supported. For example, it provides an opportunity to participate in different activities and meet new people.

The person living with dementia can also be reluctant to use respite services.

Common reasons include

  • Not liking change
  • Anxiety about being looked after by strangers
  • Fear of being abandoned

Encourage the support person to access respite early and in short bursts to build confidence in accessing respite and for the person with dementia to get used to their support person being away for short periods of time.

Resources

Dementia Australia Help Sheet - Caring for someone with dementia

Dementia Australia Help Sheet - Difficult feelings including anger, grief and loss

Dementia Australia resources - Taking care of yourself

Caregivers Guide - Dementia, care-giving and controlling frustration

Dementia Australia Help Sheet - Communication with someone living with dementia

Dementia Australia Help Sheet - Explaining dementia to friends and family

Dementia in my family - A resource for helping young people understand dementia

Contacts

Dementia Australia (www.dementia.org.au or Dementia Helpline on 1800 100 500) for:

Commonwealth Respite and Carelink Centres (Freecall 1800 059 059, this number automatically localises to your region) offer:

  • individual and family counselling
  • advice and support on local respite services.

Information on different types of respite available and how to access respite can be found on the My Aged Care website on https://www.myagedcare.gov.au/respite-care

Centre-based respite, flexible respite and group and individual social supports service providers can be located here https://www.myagedcare.gov.au/service-finder/help-at-home

The person with dementia who is under 65 and/or their carer can access services through the National Disability Insurance Scheme (NDIS). The NDIS provides respite-like support via a program called ‘Support for Sustaining Informal Supports’. Contact the NDIS help line on 1800 800 110 or ndis.gov.au

Information on carer payments and allowances can be found at or contact Centrelink on 132 717.