A 64-year-old farmer, Jüri, was diagnosed with dementia followed by Alzheimer's and Parkinson's disorders in 2018. Since then he has lived in the Põltsamaa nursing home, which has 150 residents and a separate dementia unit. There his condition stabilized.

"Dementia is the type of disease that takes away your very nature, and I now have to be very conscious that my father's current character is a result of this disease," Jüri's daughter Seidi Soini told ERR's TV show "Pealtnägija" ("Eyewitness").

Jüri's contract with nursing home terminated

Jüri's illness-related behavioral issues began with frequent requests for a cigarette and wandering around his ward, but as the illness progressed, new problems cropped up, such as a difficult relationship with another patient on the same ward. It was decided that temporarily transferring him from the dementia specialized unit to the general care unit would be the best option for everyone.

"People in the care facility all need a calm, safe environment and if there is a person who needs a little more support than the unit can provide, then the situation gets difficult," Marge Tammesalu, the head of Põltsamaa nursing home explained.

"There was a verbal agreement that if the disease caused problems also there, he would be moved back to the dementia ward," Saidi explained, "nevertheless, we were asked to moved out."

Seidi received a letter from the nursing home, which she described as being a complete surprise to her, notifying about the contract's termination with two weeks' notice. The letter listed such complaints as Jüri's late-night wandering and his mental and physical hostility.

"In fact, these incidents occurred weekly. It was not the severity of the incidents as much as their systematic pattern," Tammesalu said.

Marge Tammesalu took over as director of Põltsamaa Home a few months before the letter was delivered. She believes that communication with Jüri's family should have been more regular and diplomatic, but that the performance of the workers and the comfort of other customers is more important. According to the manager, the regular nursing unit only has a single person working at night, but the dementia unit has two.

Tammesalu said that the Jüri could not be returned to the dementia ward: "As a result of a previous incident, such a transfer was unfortunately impossible. As his health started to deteriorate and his care needs increased, he required admission to the dementia unit, but we were unable to do so."

According to Seid, Jüri was kicked out from the nursing home because he was bothering the staff.

Cases similar to Jüri's are commonplace

Not only Seidi Soini, who is also a member of the board of the NGO "Elu Dementsusega," ("Life with Dementia") but also several other families with the same fate, the counselors dealing with the issue and some ministry officials confirmed to "Pealtnagijja" that, unfortunately, there are many similar cases to Jüri's in Estonia.

Most general nursery homes are privately owned and operated facilities with limited staff and lengthy waiting lists, that routinely reject more challenging patients, even if their health evaluation indicates they require health care services.

"There are cases where relatives have been left in the lurch because the service provider cancelled the service with little notice. On average, one to three such cases occur per month and this problem is not new," Tallinn Social and Health Board head Raimo Saadi said.

"Of course they are scared. It is extremely difficult if no problem-solving oriented teamwork is in place; staff simply becomes tired and gives up," Hanna-Stiina Heinmets, a counselor at the Dementia Competence Center, said.

"This is not a common practice. It is still a very rare occurrence and, technically, it is not a case of contract termination as such, but in most contracts the reasons for termination are specified," Tammesalu said.

Heinmets, who has been involved in Jüri's case, and Saadi both said that they have dealt with more situations in which the nursing home administration abuses its position of power.

Ketri Kupper, the chief specialist social welfare department Ministry of Social Affairs, along with the relevant non-governmental organizations, and the family members of care-seekers, all confirmed that nursing care service contracts are slanted against the interests of customers.

The administrator of the Põltsamaa Home said that there are five to seven persons in line for their dementia ward at any given time. However, the primary reason of contract termination, as in Jüri's case, is the breach of the rules of conduct.

"Naturally, first and foremost, no contract should contain unjust terms or language that diminishes human dignity. In any case, we do not wish for anyone to refer to our mother, father, grandmother or grandfather as a living being," Kupper said.

Contracts in general nursery homes, of which 80 percent are privately owned, are skewed to the detriment of customers, according to lobbying groups and the ministry. In a 2018 evaluation, for instance, the ombudsman noted that contracts frequently "prohibit staff bullying" and typically refer to residents as objects.

"Nursing homes have a duty to care because they provide a human living environment. However, a person's comfort zone or well-being cannot come at the expense of others, as everyone has rights. Home rules they must be written in language that people can understand and be reminded of on a regular basis," Tammesalu said.

Moreover, Põltsamaa Home, which is part of the broader South Estonia Care Center network, makes no special distinctions in its contracts for mental conditiones like dementia. The contract is so general that any violation of the nighttime curfew or departure to another room can result in its immediate termination.

"Since this is a private contract between two parties, I unfortunately agreed with the care providers that if my father does not comply with the home rules, they had the right to terminate the agreement, and that is what they did," Seidi explained.

"It is not a child attending a summer camp who could be sent home if he breaks rules. He suffers from a medical condition. /.../ You put him in a supposedly specialized ward, and now you claim that he's not following house rules," Seidi responded.

"Whether a person has memory loss, dementia or another condition that requires physical assistance, no contract should be written in such a way that it violates the contract's underlying principles, as well as the principles of good faith and fairness. The contract could not, under any circumstances, be terminated overnight. The same holds true for dementia patients: they are ill. We can all agree that if a mentally disabled person insults you, you should not take it personally," Kupper said.

General nursing home reform could make things worse at first for patients with dementia

The major restructuring of nursing homes services should begin next summer. Simply put, one of the current coalition's most important promises is that every pensioner will receive a place in a nursing home, with the local government covering any additional costs. However, many argue that the proposed reform will exacerbate the situation, at least initially.

"The need is present right now, but people are left to fend for themselves. In some sense, the system has already fallen apart for me. We are just trying to cope in this situation and our loved one are trying to cope," Hanna-Stiina Heinmets said.

"The downside of the reform is that if funding increases, so will service providers' capacity to provide more staff, better quality services, or adapt services accordingly. The primary effect could be, however, that there will be even more demand for general care services. For example, if a family has decided to cope at home due to financial concerns, they may be more willing and interested in referring their loved one to a care home if costs were to be reduced. Also, if the incoming client has fewer care needs, it may be more difficult for the heavier service needing group to receive care," Raimo Saadi said.

There are now about 10,000 people residing in general nursing homes in Estonia; however, it is estimated that many more require placement.

When the reform goes into effect next summer, there is a risk that the demand for these places will increase as well.

The expectation is that consistent state funding will attract new staff and service providers.

Critics of the reform assert that the budget allocated for it is unreasonably minimal and that its implementation is not well though-through.

Ketri Kupper, the chief specialist social welfare department ministry of social affairs, sees the reform primarily as a measure to prevent abrupt contract terminations and misuse of authority:

"People will now move into care homes mainly through local authorities, who will be one of the contract's parties and will also have the chance to discuss the terms of the contract and ensure that the resident's rights are protected."

"With this reform, we will certainly improve the current situation, but we should also evaluate whether perhaps a different solution is needed. We are welcoming this discussion," Kupper said.

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