Between a rock and a hard place: Exploring the service needs of younger people with dementia

Abstract

The commonly held perception that dementia is a condition of older age belies the fact that people under 65 years, and younger, present with dementia. Services for people with dementia have traditionally focused on the needs of older adults; people who are retired and more dependent. Younger people with this condition however, face different changes related to their young families', current employment and at times gaining a diagnosis. Traditional healthcare services do not adequately cater for the needs of this population and evidence suggests a need for specialised service provision for younger people with dementia (YPWD). While specific services have been initiated in some counties, in New Zealand there is little evidence of recognition of this problem. To consider the effectiveness of available services a literature review was undertaken to determine the need for age appropriate services for YPWD. Two main themes were identified, these relate to age appropriate service provision, a single entry point into services, and a defined care pathway. While there is some debate about the adequacy of existing services in meeting the needs of YPWD, the consensus suggests the importance and need for a focused specialised service to address the unique needs of this group. Further research is required to clarify the form and structure of a specialised service that supports best practice and meets the needs of YPWD in New Zealand.

Managing employees with dementia: a systematic review

“…Financially-focused, informational support, including information about various state benefits, was noted as essential for those working at the time of diagnosis [25,26,37,38,44]. Lack of suitable information can make choosing between early retirement, redundancy or state benefits difficult and inappropriate choices may cause additional financial hardship [1,4,28,30,35].…”

Exploring the Service and Support Needs of Families With Early-Onset Alzheimer’s Disease

“…This includes interagency collaboration that addresses care needs, formal and informal social and emotional support, and assistance with financial planning, employment, and benefits. 10 Until such services and approaches are developed and implemented, it appears that families dealing with EOAD will remain “between a rock and a hard place.” 25…”

Younger Onset Dementia

“…Some authors also recommended the introduction of specialist services for YOD, 21,33,50,[181][182][183] and such services are increasingly available internationally. Given the relative rarity of YOD, for countries that have vast areas of sparse population such as Australia, access to specialist services in rural areas presents challenges.…”