Dementia diagnosis delays causing isolation to be magnified

Delays in getting a dementia diagnosis have led to isolation being magnified, according to Carmel Geoghegan, who founded Dementia Ireland in 2017 after piloting it for a number of years, having been a primary carer for her late mother.

Dementia Ireland works to empower communities to keep the spotlight on dementia, raising awareness, striving to break down the stigma attached to a dementia/Alzheimer diagnosis, and to give a voice to those affected.

It disseminates information and hosts training programmes for family carers and paid social care workers. It also highlights the gaps in services in rural Ireland.

The current situation due to the pandemic is, Carmel said, extremely worrying.

“Families are being separated from loved ones in care homes. This is horrendous and totally unacceptable. At least one family member can become a designated key connection but loved ones are fading away, totally confused as to why no-one visits or, if they do, they are looking through a window. Where are human rights in all this?

“Carers and supporters are at their wits’ end with no respite, no support, no day centres, again another lack of organisational skills. What are staff from day care doing?

Community-based connection

“We need more community-based connection and interaction, be it a buddy system for a phone call for a chat. Meals on wheels, both for the knowledge that someone will be calling and also a cooked meal provided, are essential.

“Winter is always harder for everyone. Darkness descends early and evenings are long if you have no human contact,” said Carmel.

“Figures from the HSE [Health Service Executive] are saying that 55,000 people have a dementia diagnosis but how many are undiagnosed due to fear, stigma and lack of understanding?

Roughly 10% are under 65 years-of-age. This is a particularly vulnerable group as they are still very active in their communities, maybe still working, maybe the breadwinner in the family so it is very difficult.

“There are no supports for under 65 year-olds, only over 65 year-olds as they then qualify under older people status. I just completed a piece of research on under 65 year-olds. I surveyed several countries and I found that all have the same problems – no support, no recognition of the under 65 year-olds.

“Unfortunately a lot of people get a late diagnosis and this, I feel, puts them at a disadvantage. They do not get an opportunity to put their affairs in order, make decisions regarding their future and get support in place to remain living as independently as possible for as long as possible.

“Getting a diagnosis is not the end of the world. Life is still very full and rewarding when given the support to stay active and positive in the community,” said Carmel.

At a 2018 conference, individuals from several countries travelled to Galway to exchange experiences with those living with the diagnosis here, she said.

“It was great to share this information, to see the work being done and the positive living experiences that were the outcome.”

Carmel believes strongly that people with dementia have a right to live in their communities and be treated like everyone else. They should enjoy the same rights and opportunities as everyone else, with access available to a range of live-in, residential and other community supports, she said.

At present in this country, there is still no alternative to going from your home straight into a long stay care home, according to Carmel.

“This is so sad as many could easily adapt to assisted living communities,” she said.

Rural areas disadvantaged

Living in a rural area is generally a disadvantage when it comes to support for people with dementia, Carmel contended.

“Transport is a major issue and there are also small populations and lack of funding. Even getting technical support is difficult as broadband is non existent in some areas and of course not everyone is IT savvy. Urban areas have more access to day centres, bingo and recreational activities such as swimming pools and golf.”

According to Carmel, carers are often very isolated and unsupported. “This is so much worse because of Covid-19. Home care is stressful and if you are lucky enough to have assistance, worrying about the carer coming in and if they might have Covid, is another headache.

Respite is completely gone. There is no break to a residential care facility and no family member is able to come and take over for them to have a break.

“Covid-19 is really playing havoc with mental health. It’s so much more difficult when you know you have no choice,” she said.

One chink of light was that in last week’s Budget, dementia was referenced for the first time, according to Carmel.

€13 million was allocated for four new regional memory clinics in Waterford, Wexford, Sligo and Mayo. They will provide assessment and support services, greatly needed in the west of Ireland as we have a big number of diagnosed people along the western seaboard.

“There are other supports like home care hours and an increase in carers’ support grants but when will these come into effect? We need support now.”