\u201cWhen you burn out, care partners are at risk of developing a chronic condition themselves, and that\u2019s where the respite is so important in trying to get care partners to realise that they are actually priority No 1 and then the person they\u2019re responsible for.\u201d<\/p>\n
Henderson is speaking from experience.<\/p>\n
\u201cMy mum and dad used to live with my husband and me, and my mum developed dementia,\u201d she says.<\/p>\n
\u201cI was her care partner for eight years.\u201d<\/p>\n
While caring for her mum, Henderson experienced something called \u201cambiguous loss\u201d.<\/p>\n
Rather than grief over a loved one dying, it\u2019s grief over slowly losing parts of them as their disease progresses.<\/p>\n
\u201cThings happen and things drop away, but the world doesn\u2019t acknowledge us… society doesn\u2019t acknowledge the grief and the losses that a care partner of someone with dementia goes through,\u201d she says.<\/p>\n
Dementia New Zealand senior educator Winifred Henderson recommends care partners take regular breaks from the caregiving role. Photo \/ Supplied<\/p>\n
As a result, caregivers often experience depression and anxiety. Henderson wants them to know that support is available through organisations such as Dementia New Zealand.<\/p>\n
\u201cMental health services will provide that support if necessary… [it\u2019s] important to have a big support network around you \u2013 family, friends, healthcare professionals.\u201d<\/p>\n
She advises care partners that they need to take regular breaks from the caregiving role, for several hours a week, one weekend each month, and a 10 to 14-day break at least twice a year. <\/p>\n
\u201cIt\u2019s really important that people understand what resources and tools are available, that they reach out and make use of them fairly early on… so you can cope for longer and better than if you say, \u2018I will cope on my own\u2019. This is often the attitude people have, which is misplaced when you\u2019re on 24\/7,\u201d she says.<\/p>\n
\u201cThe more understanding and knowledge there is, that way we reduce stigma, because stigma is very often what isolates or excludes people, and that leads to loneliness. We know that if somebody\u2019s lonely, cognition will drop off a lot quicker.\u201d<\/p>\n
September is World Alzheimer\u2019s Month and advocates say more knowledge is needed to help reduce the stigma around dementia in general.<\/p>\n
Dementia is an umbrella term encompassing several syndromes affecting memory, behaviour and cognition. The most common type is Alzheimer\u2019s disease<\/a>, followed by vascular dementia, Lewy body dementia and frontotemporal dementia<\/a>, while 30% of people have a mixed dementia.<\/p>\n There are about 200 different causes for dementia, with secondary causes from diabetes to head injuries, heart or kidney disease and more.<\/p>\n Dementia New Zealand CEO Cathy Cooney estimates there are 80,000 Kiwis living with dementia. By 2050, that number could reach 180,000 \u2013 or higher.<\/p>\n Henderson suggests that number could be doubled because so many people don\u2019t get a diagnosis.<\/p>\n \u201cThat may be either because they believe it\u2019s part of normal ageing, or for cultural reasons they don\u2019t get a diagnosis, or the stigma surrounding dementia prevents people from getting a diagnosis.\u201d<\/p>\n The person with dementia needs to be aware of their condition and willing to get that diagnosis, drawn from various medical and cognitive tests, family history and mental health assessments. <\/p>\n That\u2019s why dementia is \u201cunique to each individual\u201d, Henderson says. \u201cWe always say if you\u2019ve met one person with dementia, you\u2019ve met one person with dementia.\u201d<\/p>\nDementia New Zealand CEO Cathy Cooney says it’s important for people to keep their brain active for as long as possible. Photo \/ Supplied<\/p>\n