Making a home from home

Facilities for sufferers of young onset
dementia are thin on the ground. Natalie Valios visited a
care unit in north east England that is generating much interest
for its innovative and flexible methods.

Dementia is stereotyped as a disease that
affects older people yet, according to an NHS research study in
1998, young onset dementia occurs in a surprisingly high proportion
of the population – 67 people per 100,000.

Defined as dementia suffered by those under
the age of 65, it involves a progressive degeneration of the brain,
major impairment of mental facilities and personality change.

Dedicated services for this client group are
rare. So a 12-bed unit in Billingham, Cleveland, that specifically
caters for people with young onset dementia is generating much
professional interest. Nine months into opening, Priory Grange has
four residents; with four more assessed and waiting for
funding.

The unit, owned by Westminster Health Care,
works with individuals aged between 18 and 65 either with young
onset dementia or a cognitive impairment as a result of a brain
injury. The expectation is that most residents will stay for life.
The four current residents range in age from their thirties to
their sixties.

The poignancy of their situation is not lost
on unit manager Sheryl Smith: “Sometimes when I have gone to do an
assessment, it crosses my mind that these people are more or less
the same age as me and I could have been in a pub or club and met
them. And I think, ‘there but for the grace of God….’

“This is why we have to promote freedom and
independence for our residents, because I know if the shoe was on
the other foot I would like someone to do that for me.”

Initially, most people will start presenting
with early signs of young onset dementia in their thirties. In its
earliest stages, however, it is easily confused with depression or
a psychotic episode, as symptoms include low moods, lethargy and
acute psychosis. The types of dementia commonly affecting younger
people include the genetic disorder Huntington’s disease, and
frontal lobe dementias such as Pick’s disease, which affect an
individual’s social skills and cause personality changes with a
quite rapid deterioration.

Those who have suffered a brain injury –
through a road traffic accident, assault, fight or fall – are
normally more aware of what is going on around them than someone
with young onset dementia, says Smith. And although it is often
difficult for someone with a brain injury to live in the community
unsupported, the degree of their cognitive impairment remains
fairly static, whereas the mental state of someone with young onset
dementia will decline.

Priory Grange is registered with Tees health
authority as a unit that can provide care for people detained under
section 3 of the Mental Health Act 1983. This section allows for an
individual to be admitted for treatment, to be reviewed annually if
they are considered to be a danger to themselves or others or if
they are not taking their medication. Currently, all residents are
detained at the unit.

Days are unstructured, clients get out of bed
whenever they want and there are no set meal times – they are
provided as and when required. The same goes for snacks and drinks
unless, of course, there is a reason for having meals at a certain
time, for example if a resident is diabetic. The meals for
residents with Huntington’s disease provide about 5,000 calories a
day as the jerky, involuntary movements that characterise the
disease burn a lot of calories.

Risk assessments are an important part of
allowing residents freedom. Huntington’s disease causes mobility
problems so it is important for someone with the disease to get up
regularly and walk around. However, left unsupervised, they are at
risk of falling.

“If you have assessed risk properly, drawn up
a care plan, spoken to the person themselves, their family and
staff so that you have a consensus of opinion that this is the risk
you are going to take, then if it happens it happens,” says
Smith.

“People would much rather have the freedom of
walking around and run the risk of injury.”

After referral, Smith carries out an
assessment and fees are worked out from that, depending on their
nursing care package. The specialist nursing care team is backed up
by a range of therapists including a consultant psychiatrist,
physiotherapists and speech and language therapists. All are
available on a needs basis – someone with Huntington’s disease will
need speech therapy on an ongoing basis because they have
swallowing problems.

Despite the specialist nature of Priory
Grange, staff maintain a relaxed atmosphere so that living at the
unit feels more like being in your own home than in residential
care – there are no rules restricting the use of the CD player or
the TV, which can be on all day if residents so wish. Staff are of
a similar age to residents so there are a lot of conversations
about what is happening in the world from the same perspective,
says Smith.

The unit’s philosophy of trying to provide as
normal a life as possible within the structures it must follow to
care for residents extends to outside activities. One resident
rides horses, and they can all garden, and enjoy outings to places
of interest and spend evenings in pubs.

Therapeutic work with residents can be as
unstructured as their daily routines. Encouraging them to do
something as ordinary as washing themselves helps to regain lost
skills. And games of dominoes or Scrabble may seem like an innocent
pastime, but they have a more fundamental function at Priory
Grange. They are a way of stimulating mental and motor activity,
and encouraging number recognition and dexterity skills.

As well as relying heavily on the practical
support provided by staff, residents can also count on emotional
support whenever they need it. In the early or mid stages of any
cognitive impairment, people have flashes of insight and are aware
that something is wrong, says Smith. “During these periods they
need a lot of tender loving care and reassurance.”

Since this article was written, Sheryl
Smith has left Priory Grange

PROJECT PROFILE

Project: Priory Grange.

History: The Priory Group
owned several psychiatric hospitals in Britain – the most famous
being The Priory in Roehampton, used by the rich and famous needing
drink and drug rehabilitation. Private company Westminster Health
Care, which owns residential and nursing homes, bought the Priory
Group two years ago. Westminster Health Care decided to develop
units attached to their nursing homes where appropriate. Priory
Grange is the first such unit in north-east England. It opened in
October 2000 and is attached to a site housing a nursing home for
older people.

Funding: Westminster Health
Care invested £100,000 in developing Priory Grange. Residents
are funded by health authorities or through a joint partnership
between social services departments and health authorities. Fees
start at £1,000 per week per resident and increase depending
on people’s needs.

Staff: One part-time and four
full-time psychiatric nurses, including Sheryl Smith; 12 support
workers. Staffing levels are adapted as residents come into the
unit: for example, one resident might require one-to-one support,
while another might need support on a two-to-one basis if care
needs are higher.

Clients: Anyone between 18
and 65 with young onset dementia or a cognitive impairment due to
brain injury.

Contact: Melanie Aukland,
home manager, The Priory Grange, Westminster House, High Grange
Avenue, Billingham, Cleveland TS23 3TY. Tel: 01642 561700.