3 Access to and quality of support
services
13. People with dementia need a complex mix of support
from carers and health and social care to remain healthy and independent
and they rely on multiple service providers. Dementia therefore
presents a key test of the quality of local joint working, which
continues to be a barrier for people with dementia. The Department
acknowledges that poor integration is a common criticism of services,
particularly for long-term conditions where a whole series of
agencies are involved.[20]
14. The process of care management and co-ordination
for dementia is complicated and usually falls to carers to deal
with. People with dementia and carers should have a single point
of contact they can turn to from diagnosis right through their
disease progression. Successfully co-ordinating care in dementia
requires good collaboration between primary and secondary care.
A care co-ordinator need not be the GP, but could be any member
of health or social care services or a member of a multidisciplinary
team. A member of a Community Mental Health Team would, for example,
be well-placed to act as a case manager.[21]
15. Informal carers supporting people with dementia
save the NHS and social care over £5 billion per year. Without
them, the present system of care and support to people with dementia
would be unsustainable. But caring can place a heavy burden on
the carer's physical, emotional and mental health, and can lead
to depression. Unpaid carers incur personal financial costs, including
lost employment, lower earning and lost pension entitlements.[22]
All carers over 16 years are entitled to a Carer's Assessment
under the Carers and Disabled Children Act 2000, which enables
the carer to discuss with social services the help they need to
care, to maintain their own health and to balance caring with
their life, work and family commitments. Between a half to two-thirds
of unpaid carers, including those caring for people with dementia,
are not receiving such an assessment, and those who do receive
one often do not have it followed up. The Department is taking
some steps to help carers through, for example, expanding the
telephone helpline for carers and increasing the level of emergency
care cover available.[23]
16. A key form of support in the community is domiciliary
or home care, such as an assistant coming into the home to help.
While this is a core service for many people with dementia and
their carers, it is becoming increasingly difficult to access
as councils restrict eligibility to services as part of cost-efficiency
measures. As well as problems with access, there are also issues
around quality of domiciliary care. Domiciliary care workers generally
lack any qualifications and there are no incentives for them to
gain qualifications. 70% of the social care work force is without
qualification. They are poorly trained and poorly paid, leading
to difficulties with recruitment and retention and consequently
a high turnover of staff. Lack of continuity for service users
results, which can be unsettling and distressing for people with
dementia. Many home care staff do not have English as their first
language, which leads to communication problems, despite communication
skills being a requirement of the Common Induction Standards which
all staff should achieve. The Department believes the situation
is improving with many staff now paid above the minimum wage and
training courses provided in areas such as lifting, handling and
appropriate bathing. Its five-point plan to raise the status of
social care will help to address this issue and make social care
a more attractive career option, and help raise the standards
amongst its workforce.[24]
17. Good quality respite care is invaluable for carers
of people with dementia, allowing both people with dementia and
carers a short break, either in their own home, at a care home
or at a community hospital facility, at a time to suit the carer.
With this support, people with dementia can usually live at home
for longer. Significant numbers of carers either have no access
to respite care, or they have less access than they need or when
and where they need it. The Department believes that improvements
can be achieved through working with organisations such as the
Princess Royal Trust for Carers and Crossroads, to enable assistance
to be provided in people's own homes which many people prefer
to care in an institution. Its Carers' Strategy is also designed
to equip both the workforce and carers with the skills to care.[25]
18. Whilst caring for a relative with dementia is
often a positive choice for the carer, it carries a large personal
cost. Given the savings achieved by delaying or avoiding people
with dementia being admitted to hospital or care homes, carers
represent a cost-effective way of providing care. The Department
accepts that it needs to provide commissioners, both Primary Care
Trusts and Local Authorities, with the necessary information so
as to convince them to prioritise good domiciliary and respite
care and this might be factored into Local Area Agreements.[26]
As recommended in the C&AG's report, the Department is developing
a business case to identify the savings and benefits.[27]
20 Qq 61, 73; C&AG's Report, paras 4.3-4.7 Back
21
Qq 35, 62, 74; C&AG's Report, para 4.13 Back
22
Q18; C&AG's Report, paras 1.10, 3.17 Back
23
Qq 18-26, 46-48; C&AG's Report, para 3.17 Back
24
Qq 58, 79-83; C&AG's Report, para 3.15 Back
25
Qq 28-32; C&AG's Report, para 3.19 Back
26
A Local Area Agreements is a three-year agreement that sets out
the priorities for a local area in certain policy fields as agreed
between central government, represented by the Government Office,
and a local area, represented by the Local Authority and Local
Strategic Partnership (LSP) and other partners at local level.
The agreement is made up of outcomes, indicators and targets aimed
at delivering a better quality of life for people through improving
performance on a range of national and local priorities. Back
27
Qq 64, 107 Back
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