10. Caring with support

Connecting with supportive family and friends can help relieve stress. Do remember some family members or friends may not understand dementia or may not be empathetic to the full implications of the caring in Later Stages.

Health Care Professionals (HCP) are key supports to family carers, particularity in Later Stage dementia; people such as Public Health Nurses, your local doctor, a Dementia Advisor, Occupational Therapist, Dietician, and Speech And Language Therapist.

Health Care Professionals (HCPs) and family carers have complementary forms of expertise. HCPs have knowledge of the disease and the anticipated journey of dementia. While you the carer understand the person, what works and what doesn’t in terms of their care preferences and wishes. You can learn from the HCP’s in terms of information, advice and skills to help enrich your caring experience and also to consider the future as far as possible.

Good, clear communication is essential.  Talk to the HCP about your concerns and confirm with them that you understand what is being said. Write down questions for the next time and take notes to help you remember the main points.  Open communication will help you to become empowered in the Later Stages of Care and remain active in decisions. Open communication between everyone leads to person centred care for the person living with dementia and may also facilitate the forming of new relationships. 

Communication with the health care professionals in relation to what is stressful is important too.  It is important that feelings of guilt or sadness, and/ or isolation are acknowledged. HCPs can help with the various transitions that are part of Later Stage and may help with decision making (as discussed in Unit 4).