The experiences needs and outcomes for carers of people with dementia

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Privacy is often a learned or preferred strategy. However
Age UK (2015) suggest that LGBT people looking after
a partner can feel pressure to ‘come out’ about the
nature of their relationship (or conversely the need to
go to elaborate lengths to hide their relationship) when
they encounter professionals involved in their care.
Either approach may create great additional distress for
LGBT carers. The evidence in respect of LGBT people’s
experience of health and social care is inconclusive,
both for themselves or those they care for. In Heaphy,
et al.’s (2003) research only 35% of respondents felt
health professionals were likely to be positive towards gay
and lesbian service users, whereas in the Help and Care
(2006) report 79.1% of respondents said that they had
not experienced negative responses to their sexuality
from public services or voluntary organisations. Three
factors in particular have been shown to deter older LGBT
people from engaging with healthcare providers: they
are wary of a system which presumes everyone has a
heterosexual identity and relationships; they perceive the
system to operate on an assumption that heterosexual
identity is superior; and thirdly they fear prejudice and
discrimination based on their sexuality/sexual identity
(Ward, Pugh, & Price, 2011). Willis, et al. (2011) found
LGBT carers encountered heterosexist responses and
heteronormative assumptions from health and social
care professionals, in one example to the point where a
partner faced exclusion from service.
In interviews with gay and lesbian women carers
Price (2010) found that some of the women were
concerned that negative stereotypes would influence the
assessment and ultimately the type of care LGBT people
received. Westwood (2014) in her work on lesbian and
bisexual women found that some chose to hide their
sexuality, life story or significant relationships because
they feared discrimination.
For many carers the reactions of professionals to
disclosure of sexuality were critical and influenced their
experience of receiving care. The responses reported in
a variety of studies could best be described as a broad
acceptance of LGBT people’s circumstances but without
acknowledgement of any specific needs they may have
(Price, 2010; Willis, et al. 2011; Ward, Pugh & Price, 2011)
Price (2010) reported that carers, having seen services
struggle to provide person-centred support to the people
they were caring for (most of whom were heterosexual),
expressed fear that the care and support they themselves
might receive as a member of a sexual minority. These
fears included facing negative reactions to their sexuality,
being forced ‘out’, losing contact with gay and lesbian
friends and family, losing control of their own lives,
isolation and marginalisation. Overall, they felt it unlikely
that their sexuality would be respected or supported.
Loss of self in the person being cared for due to the
progressive loss of memories, an impaired capacity to
create new meanings and continuing narrative of their
relationship is a common concern for members of the
LGBT community (McGovern, 2010).
Caregiving for people with Learning Disabilities
and Dementia
The increased risk of AD in people living with Down’s
syndrome (DS) due to genetic risk factors is widely
recognised (Aisen, et al. 2005; Zigman & Lott 2007). The
onset of Alzheimer’s disease and other subtypes begins at
an early age in people with Down’s syndrome, in the fifth
and sixth decades of life, with the average age of onset
being mid 50’s (Strydom, et al. 2010; British Psychological
Society & Royal College of Psychiatrists, 2015). In recent
years it is also recognised that as people are living with
learning disabilities into older age, the prevalence of
dementia among this population has also increased
(Strydom, et al. 2007; Strydom, et al. 2009; Whitwham &
McBrian, 2011).
Limited research exists on the family experience of caring
for a person with a learning disability and a diagnosis
of dementia and much of it is qualitative, thus limiting
transferability. However one such study describes the
particular challenges faced by the families in their study,
which included:
• a lack of knowledge in family members about the
possibility of their family member developing dementia;
• the lack of support networks available to support
families in this position;
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